5th International Symposium on Hereditary Breast and Ovarian Cancer: Twenty Years of Advances

This Tuesday I am travelling to Montreal to attend a BRCA symposium.  This event coincides with the 20 year anniversary of the discovery of the BRCA gene mutation.  For 3 days this international symposium brings together clinicians, researchers and medical personnel to talk about hereditary breast and ovarian cancer.  This scientific conference is arranged by the Hereditary Breast and Ovarian Cancer Foundation.

A feature of this symposium is a day for lay people.  This all day event is designed for people living with the BRCA mutation and the agenda provides to up to date research and clinical information.  It is open to anyone with an interest in this field.

My objective is to learn all I can about BRCA mutation and to hopefully network with some of the researchers and clinicians.  I also hope to meet other people who are in my situation and learn about their own experiences.

For those of you not familiar with BRCA genes, here is a short video that clearly explains the mutations I have been talking about.

Appointment at Princess Margaret

On Monday, April 14th I traveled to Toronto for an appointment at Princess Margaret Cancer Centre (PMCC).  I was to meet with Dr. Amit Oza to discuss clinical trials.  I actually met with Dr. Les Levin who is a member of the gynecological cancer team.  We had a great chat for about 1/2 hour.

He came to the meeting fully versed in my condition with the help of the summary provided by Grand River Cancer Centre.  He said it was a very good summary and the team had reviewed it.  I also brought with me the last 4 CT Scans and he had already reviewed those as well.

Basically, the end result of our discussion is that he and the team decided that it was unclear whether I am 'platinum sensitive' or 'platinum resistant'.  This is a very key criteria for the studies they conduct at PMCC.  I was unclear what these terms meant but he explained it very well.

Platinum sensitive:  When given a series of treatments of platinum based chemotherapy drug and a patient is disease free (not visible in a CT Scan)  for a period of 6 months or more months.  One drug of this type is Carboplatin.

Platinum resistant:  After being given a series of treatment of platinum based chemotherapy and patient shows growth of visible disease within 6 or less months.  The patient is said to be resistant to the treatment.

In my situation the team at PMCC doesn't know according to the information in my file.  My last treatment of Carboplatin in June 2013 resulted in a severe allergic reaction.  This was my second treatment in the series and my doctor and I decided we should stop treatment and take a break.  By September of 2013 my CA 125 was up 40 points to 386 and a CT Scan in October showed visible evidence of disease.  My doctor and I discussed using a different drug to avoid further allergic reactions and this is when I started the first of 5 treatments of Doxil.  When reviewing this information it is unclear whether I am 'platinum sensitive' because the number of treatments I had with Carboplatin were too few to determine what effect they had.  On the other had could I be 'platinum resistant' because I started treatment so soon after the last one but again it was only 2 treatments.  Perplexing as Dr. Levin expressed.....

Clinical trials are very regimented and almost of a military form.  The studies have to follow strict guidelines or else the researchers cannot draw meaningful conclusions which is what we want from clinical trials and the advancement of medicine.  So for this reason I currently do not qualify for any of their studies.  However, in his opinion, I currently do not show much disease growth in my CT Scans from January to March and thinks I should just take a break from treatment.  ( I am all for this.  My side effects are subsiding quite nicely.)

As a clinician he is suggesting my oncologist try another platinum based chemotherapy the next time (Cisplatin).  There is the risk of another allergic reaction but it would be administered while admitted to hospital.  This will help me in terms of disease management and to determine whether I am 'platinum sensitive'or 'platinum resistant'. In fact there are still many other drugs for the treatment of ovarian cancer that have not been used.  He mentioned gemcitabine, topotecan, etc.  I felt he listened to me and he answered all my questions.  I left there feeling quite optimistic and made my way in the rain to the nearest Winners store to shop before hopping the train back home.

I Have a Meeting with Dr. Amit Oza at Princess Margaret

My visit with the oncologist on March 28th relayed the results of the CT Scan taken on March 21st.  Scan is showing a growth of about an inch in the upper left hand abdomen and nodules of disease on the peritoneum.  Still looks ok based on the scans from January but something is happening and it is raising the CA 125 numbers.

Our discussions centred on getting me into a clinical trial.  Princess Margaret is still on the radar as my oncologist was told another doctor was being consulted regarding my condition.  PARP inhibitors are the new treatments on the horizon and still in trial phase.  Some trials have had great results and if I can get into one that would be awesome.

Couple of days ago my oncologist called to say that Dr. Amit Oza was interested in my case and in meeting me.  She confirmed his interest in me is because of the type of ovarian cancer I have, the BRCA2 mutation I carry and that I am platinum sensitive.  A meeting has been arranged for April 14th.  I hope to discuss my condition with him and the potential of a clinical trial using a PARP inhibitor.  I am going to the meeting prepared with my questions written down.

This turn of events both excites and worries me.  Exciting in that I may be entering a trial that is part of a larger picture in the future treatment of ovarian cancer.  How pleased I will be if this treatment slows the progression of disease.  But I am also worried that even though the results may be promising for some, what if it is not for me?  What if it does nothing and things just continue to worsen and grow?  Welcome to the thinking process of anyone with disease.

Physically I cannot control what goes on with my body except to take care of it as best I can through nutrition, sleep, exercise and attitude. More importantly calming my mind is the greater challenge.  How do you face the challenge of the condition and remain optimistic, calm and at peace.  It is difficult.  Occupying the mind with tasks and projects is one way that works for me.  Spending time with family and friends is another way.

Filling ones day is not hard.  There is always a myriad of things to be done in and around the house.  Even now in between paragraphs I am watching a robin outside in the backyard.  I wonder if he is scouting for a place to nest.  The key is to keep the mind occupied and focused.  This is one of the reasons I like to sew.  I constantly am thinking about future projects, checking out current fashion trends (I don't dig the current pastel trend), searching online for fabric deals and actually working on the current garment.  Nothing like several hours of concentrated effort in ripping a jacket apart and resewing it to keep my mind free of worry and concern.

I am also planning a trip to Europe this June.  I spend many hours checking out the forums on TripAdvisor to learn everything I can about a location, local culture, transportation challenges, currency, local foods, etc.  Rick Steves's books are my best friends!  I plan most days though I don't plan a minute by minute itinerary.  Lots of down time is allotted because you must spend some time at an outdoor cafe with a coffee or wine and watch the world go by!