Western education 2013

Monday, October 14, 2013

.... what is Metastatic Breast Cancer and what is Staging?

I have had a request to re-post this blog about Metastic Breast Cancer and the benefits of using MRI in diagnosing breast cancer.  If it had not been for the MRI, I would not be here right now.  Mammograms do not work effectively enough to detect tumours in dense breast tissue and are classified as X-Rays.  Here is a link that explains more about this.

October 2014 is just around the corner and with it comes the Pink Parade of Awareness.  Please remember to Think before you Pink!!!

Here is my blog from last year when I was in chemo and teaching... this year I enter my new year in pain but full of energy and ready to go!!!

October 13th 2013 was declared Metastatic Breast Cancer Day but there were those who decided to overshadow the day to declare the it as 'Save the Tatas Day' by asking women to remove their bra in support of Breast Cancer Awareness.  Like our society still isn't aware of this deadly disease?

  I am not entirely sure why or how these things come about but the short of it is that it is incredibly insensitive to those of us going through the journey.  Breast Cancer and its metastasis is anything BUT sexy and yet, we see these posters showcasing beautiful trim young women unbound by their bras.  Perhaps a more realistic photo from the front that shows the scaring and missing flesh of women who have sustained multiple surgeries to save their lives and the emotional/mental/economic impact this disease brings with it.  It is easy as an outsider to get caught up in all the hype with this being Breast Cancer awareness month and to throw your money on anything pink with all good intentions..... but those products and the hype do nothing to support breast cancer and as far as awareness.... the poster only has to say breast and you have their attention.  Manufactuing companies using the pink ribbon have long ago stopped giving money... you only need to read the fine print on their products.  Support research directly or support someone going through the journey through housekeeping, meals or bills.  Yes, even in Canada, it is expensive to go through the journey once you lose your job, insurance coverage and are unable to pay the bills.  I keep emailing a 'Pink' product company selling on FB who announced last year that they were moving into a renovated factory to accomodate the rise in orders to ask them what their profit margin does for the benefit of Breast Cancer?  I am still waiting to hear back from them.....  It sickens me to think that reading all these posts on their site about the latest cute pink product is making them rich while they let their customers believe they are doing the right thing by supporting through awareness.  This is a billion dollar a year business.  More on this another time.

What is the early stages of Breast Cancer?
Breast cancer when caught early enough is usually dealt with by surgery, chemo and/or radiation.  It is normally picked up with a monthly physical exam and often by the partner of the woman.  Some symtoms are very subtle and unless you are paying attention, the cancer will continue to grow until the symptoms become more obvious.  In my case, the left breast and nipple were very itchy and some days I couldn't get relief.  It would be 8 months before the lump became large enough to feel it and when it presented itself, it was visible.  This is rare to occur.  A mammogram did not pick up the lump but the ultra sound and consequent MRI did.  I had no less than 6 mammograms which still did not pick up the lump even after the biopsy was performed in the ultrasound lab a few minutes before.  Ironically I thought I had colon cancer and requested a colonoscopy in June of 2008.  A year later I would be diagnosed with breast cancer.  The body does try to let you know something is wrong if you pay attention and pursue it with a good medical doctor.  I have discovered in my journey that a supportive doctor and a desire to self-advocate will be your best measure for good health care.  One lady spoke to me about her family doctor that felt she was imagining things when she told him she was sure she had cancer and so he sent her to a shrink... two years later, she pushed to see another doctor and was told she was in stage IV liver and lung cancer with a poor prognosis for survival.  Intuition has been my guide.  My original doctor missed the diagnosis and when I finally got their call I had already taken up with a known good, supportive General Practitioner, who had already booked me for surgery and a follow up.  Thanks to my survivor friend Sue who was quick to contact her doctor and put her in touch with me the day of my diagnosis through the woman's clinic.  I had sought help from the woman's clinic after a failed diagnosis of a non-cancerous condition from my colonoscopy through my then family doctor.  Needless to say, that family doctor was dropped immediately.  I did let them know my disappointment in missing two diagnosis and suggested the doctor call me back and speak directly to me.  I never heard from him again.

The lump is usually removed with the goal of saving the breast (breast conserving surgery) and a small margin, usually 2 cm surrounding the lump is removed.  All tissue is checked to ensure that the lump was successfully removed and the surrounding margins are clear of cancerous cells.  If the margins are not clear, another surgery is involved and a sentinal biopsy is performed.  The sentinal node is the first node closest to the lump which is harvested and tested for cancerous cells during the first surgery.  If this tests positive, there will be more nodes harvested under the underpit.  All harvested nodes will be put through pathology as will all tissue and a determination will be made as to the next step in the medical part of the journey.  The 23 + nodes they removed from the armpit proved to be healthy.  I deal with the occassional lymphatic edema in the left arm which necessitates wearing a compression sleeve.

Radiation is an option they will explore when considering the cancerous cells in the breast and if the margins were questionable.  At this point, if there are any trials being conducted that you fit into their criteria, you will be asked to participate.  I participated in the Rapid Trial which reduced the time of the radiation to only 5 days 2x per day from the standard of 35 days, once per day.  Once radiation is done in a specific area, it will not be allowed to be performed again.  In cases of metastasis to the bone or other regions in the body, it can and would be an option.

There are three hormone receptors they look for when testing the kind of breast cancer you have so they can create a plan to destroy or control the cancer you have:

Endocrine receptor (estrogen or progesterone receptor) positive
HER2 positive
Triple negative (not positive to estrogen, progesterone or HER2
Triple positve (positive to Endocrine receptors and HER2)

I have Triple negative which affects only 10-17% of all breast cancer diagnosis.  Chemotherapy is the option used to control this cancer.  BRCA1 gene mutation is usually associated with this type of cancer and the one in which Angelina Jolie was diagnosed with.  The prognosis is generally not as positive as the receptor postive cancers which can and are controlled to prevent a reoccurance through medication after chemo and radiation.  A family relative recently told me that triple negative was 'no big deal'.  Perhaps to her its not but yes, cancer in any stage is a big deal.  It is detectable which means the immune system was unable to identify and destroy it when it first began to develop a tumour.  There are many 'experts' who have no experience and who are willing to offer their spin on your medical condition.  These are not the kind of people you would be wise to hold court with or the kind who would offer you the support you need because their needs always come first.

This cancer is insidious and in my case, it was found in my neck 3 years after chemo ended and upon scrutiny in the pathology lab, it was noted that the cancer in fact had not been eliminated and that its DNA was identical.  It merely hid and with a catalyst, likely in the form of high level stress, it began to grow again.  Taking care of parents, going to school full-time, too busy to sleep or eat properly.... the list continues.  When the immune system is challenged enough, its defenses go down and the cancer begins to grow.  I am classified as asymptomatic and with only a lump discovered when I dug my fingers under my clavicle while studying one night, it became obvious that something was amiss.... weeks later I would be exhausted beyond fatigue and weeks after that would lose the ability to draw in enough breath to feel comfortable. 

What is a Metastasis and Staging?
When the cancer mutates or hides (in my case) and finds its way into regions outside the point of origin it is considered a metastasis and will include a staging level. I have what is classified as a 'Regional Metastasis'.  It has relocated to a position nearby but away from point of origin.  There are different stages to a cancer diagnosis and it depends on how involved the body is with the cancer spread.  My diagnosis in the beginning stages was classified as a stage II.  Stage II means that the cancer is no longer contained within the mass but has begun its move away from its original confines.  My sentinel node biopsy was positive and contained cells from the tumour from inside the milk duct it had begun life in.  (***side note - this was likely the same duct that had an untreated mastitis infection while I was nursing after my last pregnancy, but no concrete evidence on this to confirm or deny it).  The sentinal node is the first lymphatic node just outside of the tumour and the indicator that the tumour is on the spread.  Other nodes are harvested in the region to see if it has indeed gone beyond just the sentinel. 

My second diagnosis is classified as a Stage III.  The cancer is still contained in the lymphatic nodes in my neck, under the clavicle and around the lungs and heart but it is no longer at the point of origin.  It is currently being controlled by chemo and one that is not the same strength as the original full-guns approach from 4 years ago.  This explains why I still have hair on my head, albeit thinned and courser.  There are many women living with chemo to control their cancer who sport a full head of hair who you would not know were going through a cancer journey.  Not all chemo will cause hair loss.  I did say control because at this point there is no determination of cure.  We in the Triple Negative class look to a day when the doctor declares a NED (No Evidence of Disease) and puts you in a careful watch program just to see if it stays that way.  No evidence does not mean cure.... it merely means it has become undetectable.  Cancer cells are microscopic an as such can travel anywhere the endocrine or blood system can take it.  I can only speak to my own experience when it comes to the emotional and mental fallout that a diagnosis like this means to me.  It is daunting some days to consider your own mortality when your 80 year old mother declares that she is tired of living and can only forsee being around for a few more years..... I look at her and mutter that I am merely looking at 50 next year.....  It is a waste of energy and effort to reach out to people who clearly are unable to show you care or concern during your lowest moments... they are the drama queens.... leave them alone and focus on those that do want to support you with love, care and concern whether they are family or a close friend.  The only experts who should be addressing your medical needs or information are the ones directly responsible for your care.  Anyone can 'consult' with the internet but only the doctor trained in your health matters should be giving you medical advice or prognosis.  

The final stage of cancer is Stage IV.  Yes, there are only four stages.  This stage involves critical organs and most often are the liver, lungs and bones.  This is still a survivable stage but a difficult one to manage.  Chemo and radiation are choices in these instances.  There are those patients who will have tumours shrink to a manageble size to operate and eradicate.  In my Aunt's case, she has been living with bone cancer for the better part of 30 years and is still around.  She also still smokes... her reasoning was simple.... I will die anyway.... only 30 years later, she has a smokers cough and is still alive!!!  Cancer doesn't make sense and yes, there are many really successful stories out there and miracles do happen.  The mind is a powerful thing and keeping it positive will most assuredly help along with plenty of rest, good food and greatly reduced life stresses.  Positive attitudes can carry you far and reducing the negative people in your life is a great beginning. 

By end of Stage IV, pallative chemo is used to only manage the pain and symptoms of a dying patient.  They will be generally cared for at home by nursing or in hospice after considering an end of life care plan.  I remember reading a poignant blog in my first journey from the woman who started the Lymphedivas company in the States.  Right up to the end, in her hospice room, she was still trying to assist the doctors in coming up with a chemo cocktail that would extend her life..... the last exerpt was from her husband who announced her passing at the age of 37.  Her blog is still available to read as are so many others like mine.

Where do we go from here?
This week will hold some more answers as I head into CT on Thursday.  This will determine from the baseline test I did before chemo started and the one at the midway point in chemo if we continue with the chemo I am currently on or if we change it up.  I am able to breathe well now and have a lot of energy.  When I run out of steam, I simply go to bed to sleep. My current work schedule is well paced and I am able to rest in between classes.  The hardest part of a chronic condition is coming to the realization that life will never be the same and coming to terms with your limitations.  My mother-in-law affectionately called me a control freak but we both know that it is important to me to feel that I have some control over my life and the decisions I make for it and my family.... now I have to consider limitations which I have never had to consider before.  I always keep my options open but am learning to say no more often.  

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