My Decision Was Sound, but.. What if ????

My latest diagnosis back on 7th November 2012 was indeed a surprise. Especially since my breasts passed the mammogram with flying colours. But it is what it is and nothing I think about will change the very basic and undeniable fact that I have Secondary Breast Cancer.

Just as a background for what I am yet to cover today..  Every month since age 21, I have done a self examination of my breasts. I am the one who originally found the lump in my breast.  I was not too worried because I was under 50. My Doctor was also not too worried, but decided to get the tests done anyway. I am so very glad he did.  In 2004 I was 38 years old, diagnosed with an invasive 24mm tumour that was ER+ PR+ and a Grade 3, also there were no nodes involved of the 16 that were removed at the time of the lumpectomy (with a 1cm clearance all round where the tumour had been).

With that done and dusted, I underwent AC Chemotherapy (Adriamycin / Cyclophosphamide). This was administered every 21 days for 6 cycles. After this I underwent 30 treatments of radiation and once this was all done I started a course of Tamoxifen (Antioestrogen).  This took a heavy toll on me as the chemo and I did not agree at all and spent an average of 7 days in hospital for each 21 day cycle and I also had decided that to remain “normal” I would work my way through my treatment (just quietly, we needed the $$ too).  So that was me..  Marched through this treatment and almost 2 years to the day after first diagnosis, actually began to feel better and stronger and less tired.  After that with 6 monthly appointments with either my breast specialist or my oncologist I was on my way.

I was terrified that I had been diagnosed with cancer. I was not afraid so much for me but was terrified of leaving my husband and 10 year old son behind. So I decided very quickly to pull myself together and that I would survive and meet this challenge head on, and I did.  After each specialist visit it seemed less and less likely to me that I would get cancer back again.  It is funny, I remember thinking at the time and my fear was a recurrence in my breast . Secondary did not cross my mind too often.  It only gained a fleeting thought when something I saw or read triggered it.

In 2008 my oncologist suggested that I should consider having my ovaries removed as she was concerned about ovarian cancer and also a possible recurrence of my breast cancer. I spent a long time searching for the information of the cancer that my Grandmother had been diagnosed with 35 years earlier.. But all that was found was either ovarian or Uterine but it was too long ago and the records had been destroyed.  I saw the specialist and on the current available information about me, the statistics, my history and how my body was acting it was decided (and not lightly)  that there was only a soft case for ovary removal at this point. We decided that if I wanted to, then it would be done..  To be honest, I was totally petrified about the whole thing.  I was only 38 and no information that I found or was given seemed to inspire me to take the leap.  I was using the statistics to make my case. To make me feel better about it all..  over 90% of women to get breast cancer live to the 5 years and almost that many make it to the 10 year mark.  Only 20-30% of women get a recurrence of their cancer.  There were also other statistics that showed that my chances of recurrence were way less that actually getting it back..  What I did not know at the time (did not know to ask !!! and honestly, why would you) was that those statistics did not exclude people living with Secondary Breast Cancer.

I spent many, many months fighting with myself about this decision and really you cannot know what you cannot know. I could not justify to myself that I no longer needed my ovaries. That they were part of me and if they were not broken, why would I want to have them taken out? (I know as I read that now I just look at it and that thought is far, far away. But right then and at that point in time, it was indeed a very real concern to me) I decided in the end that my chances of recurrence seemed quite low and I would stay on the Tamoxifen because that was protecting me, and that was that. – At that point in time, it was my decision and I was comfortable with it. My crystal ball must have been on the blink then !!!

Since my Secondary diagnosis, after the initial flurry of specialists, tests and operation over a 14 day period to discover what sort of cancer I had in my body I have been quite good about it all. I am concentrating on the things I can change and trying not to worry about the things that I cannot. I am positive and hopeful and I think it is reflected in how I approach each day.

It hit me last night. Almost out of the blue. What if……  What if….. What if I had decided to have my ovaries out in 2008 ?  Well you see that is the question to which the answer will never be known. Yes, my ovaries were found to be full of cancer but breast cancer, not ovarian. They are gone now and in the end the decision was not in my hands.  I had a mini meltdown with this “what if” moment. I thought I was OK with it all, but something triggered a reaction that I was not expecting and for just a while I was lost and vulnerable and yes…  my eyes were leaking (just a bit).  I actually believe it was a kind of grieving for what may have been. I wondered about all of the scenarios of the “what if”   What if they are gone, would the cancer have returned with little to eat ??  What if it did return would it have been quick to spread to all the places it has arrived to live in ??  Would it have returned into different spots ?  Would it have returned at all??

You see, since thinking and feeling this I have spoken with others. Others that share my little letters ABC and others that have only ever made it to EBC. The final thing seems to be that it sometimes matters and it sometimes does not. Ovary removal does not exclude the return of your cancer, but it does take one more option away from it.  It is such a difficult thing to know about as each and every person with cancer is totally different and each body reacts differently.

I know and understand that this is indeed intensely personal to me and some may be wondering why in the world I would sit here and share something so secret and so private. Well the answer is simple.

I want to use my experience to help inform others. You see there are no strict rules when it comes to cancer. It does pretty much what it wants and arrives at the most inopportune times.  There is no single answer for any woman who is faced with and ER+ or PR+ breast cancer and looking at  having her ovaries removed, but I now have the amazing gift of hindsight.

There are many out there that have not have their ovaries removed and have indeed not had a re-occurrence. There are those who have and it has still returned and finally there are those who did not and it also returned. Basically, three categories really. But not one could really be foreseen. Not without other factors coming into play

But I know about me and I make it a habit to never ever regret any decision that I make. I make them and live with them. you cannot undo a choice made, you can only move forward and keep making choices.  I also know that of all the decisions in my life that I have made that this is the one single decision that is something that armed with my current knowledge I would have chosen to remove them. But life is not like that and besides there is no way of knowing if my decision made any difference in the re-appearance of my “squatters”.

I fight the “what if” syndrome more than the actual decision. The decision was sound and informed at the time. The “what if” syndrome is a mean and nasty adversary.

Last night I was totally devastated that this decision may have made the difference to the rest of my life.  I sat and pondered it for a while and have now decided that this needed to come to the surface. It was not healthy or welcome living just under the surface out of sight. I have purged it now and I am comfortable with it all. But I am positive that I needed to write this. To get it out into the open where people could read it and maybe just maybe I could help someone to find more answers for themselves.  At the end of the day, each person needs to make a decision that is right for them at the time.

Treatment has come so very far since I was first diagnosed back in 2004 and I hope that it continues to give more and more choices to the women who find themselves with this disease.  It is statistically a disease that the average age is around 60 but I know of many of us who are well under 50 and it is usually more aggressive too.  Ladies, check your breasts each and every month. If you do not know how to then ask your GP or local BC organisation for assistance (check my post – The Five Steps of a Breast Self-Examination)

It is not just an “older” woman’s disease. I am 47 years old and have Secondary Breast cancer.  If you find a lump do not be afraid as 9 out of 10 lumps are not cancer. But do not leave it.. Get it checked out as quickly as possible to discount this evil disease. If you are unhappy, get a second opinion.  I am very lucky, my medical team have been wonderful and I indeed trust them with my life.    If you find yourself in the group of the 1 in 8 that are diagnosed with breast cancer stay informed, ask questions, be comfortable with your team and your treatment. Join a group where you can ask about their experiences as well.  This way your decisions will not be any easier but you will understand much more of what is happening.

I am hoping that with the advancements in research and development that the number of deaths from breast cancer will fall and eventually be zero and that it becomes just a disease that we find, treat and then do not worry about any longer.  I have not written this to scare anyone but actually to empower them to find the answers that match their requirements at the time and help them to make decisions that need to be made.

And as a final note. Please don’t forget that Breast Cancer is not just a women’s disease. Men unfortunately can get this disease too.

Awareness and Early Diagnosis are the best weapons against this disease that we have.