Saturday, March 30, 2013

An Unpleasant Surprize

EARLY STAGE BREAST CANCER, NEW ZEALAND

I am a 50 year old female.  This makes me a candidate for breast cancer by default. One in nine women in New Zealand will be diagnosed with breast cancer. As the median age of diagnosis is 59, I am a little on the young side for the fairly generic breast cancer I have been diagnosed with. Age 50 really snuck up on me, and I really feel about 37.  Was it time already to get serious about health, such possibilities etc.,?

Last year about August I had another female problem, large fibroids causing fairly massive blood loss each month. I was worried something very sinister was happening in there, but somewhat relieved that the diagnosed fibroids have little connection to invasive cancer. I was diagnosed as having two large fibroids, one about 20 cms diameter, the other about 12cms. I had a abdominal hysterectomy at the end of August where my 41cm in length uterus was removed (this should be the size of a pear, not a melon!).  Six weeks was predicted for return to full normality, in reality it took about twice that. I kept just my ovaries so that I did not go straight into menopause.

I was preoccupied, but just prior I noticed how my right breast had become slightly "annoying". I had put a little weight on so my clothes were tighter, but suddenly all my clothes were turning to the right as I wore them, my necklines rotating clockwise by an inch or two as a day or evening wore on. "How peculiar" I thought, and mentioned it to friends, and my partner.


Picture above: Xmas 2012 with my girls in my musical lineup "The Mermaids Dance Band" - see my dress (that's me on the right) turning to my right, exposing some bra in an annoying fashion. I have always had one breast larger than the other, but something else was going on . . . .

I am an intelligent woman, but this change did not set off any warning bells.  It really should have, but nor did anyone else think much of it except "that's weird". But "ANY CHANGE IN SHAPE OR SIZE" is a red alert for breast cancer. I thought it was just bigger, but there was something just slightly off about the shape too . . .



Another photo Christmas 2012, my dress turning to the right "by itself" again. (I am on the far right)

OK, so then I got the call, but I think I knew before I even went to the appointment, that it was not a false alarm, and I had never had a callback from a mammogram before.

A callback involves a manual feel around by a specialist nurse, someone adept at finding unusual lumps. She marked several areas in black felt pen to investigate further. Next I had another mammogram, on both breasts. Then an ultrasound to see what these lumps really looked like. The very last lump she looked at was the "baddie". I looked at the ultrasound screen and said "I don't like the look of that". The ultrasound doctor said "you have no point of reference" and I said "I know, but it looks so dark" (it also looked root like - like a small stubby carrot, a twisted postage stamp, with small branches, shooting left and right . . and if I recall one going downward?). She replied "cysts look much darker", so I concluded she knew it wasn't that.  

Finally, because of this thing's suspicious looking nature I was also given a needle core biopsy, which was not particularly uncomfortable, as two injections numbed the area, and I felt no pain as the staple gun sound went off each time - just the tiniest cold pinch as each the five samples were taken.  I turned around at perhaps the wrong, but quite informative moment, to see the needle deep inside the tumour taking the sample. It was actually very interesting.

I googled ultrasound breast cancer images when I got home, and knew immediately I had already seen something like these that day. 

At the Breast Screening Clinic a week later there was something of a wait for my appointment. The receptionist very kindly let me know this was not unusual, as the doctors are always waylaid before these series of appointments started. The date was 13 Mar 2013 - I thought "uh-huh" as soon as I realized my results date fell then. Usually only one in five women get a bad result from a callback.  That day, all ladies attending their results appointment got the same kind of news, I found out later.  I am not particularly superstitious, but it seemed a memorable date, and the prognosis of cancer, no matter how advanced or early, is a life-changing moment. 

As soon as I entered the room I spotted the outline of a woman's upper body diagram on the desk with a picture drawn on it, of a lump. I was handed tissues immediately, when informed "unfortunately it is cancer", tissues I did not use. 

I immediately felt like fighting and dealing with it, I did not have a lost, doomed feeling at all. In fact, most days since this prognosis have been extremely pro-active, positive, life-affirming and fully lived days. Nothing like this to give one a "boot up the arse" and a great excuse to give up drinking permanently. Much as I love my tipple, I figure it contributed to this. 

My liver was often busy processing alcohol instead of breaking down estrogen, the exposure over a lifetime, since onset of menstruation, is a common association with breast cancer, thus I had increased my exposure. It turns out my cancer is over 90% positive for ER and PR, which means it's growth is stimulated by estrogen and progesterone, from my still active ovaries. Alcohol did not cause any other particular problems in my life, but I sure could "put it away". Half a bottle of vodka at a card game, and 3/4s of a bottle of wine by myself on a languid evening, a couple of nights a week sometimes. I never "seemed drunk" either, but apparently it is doing more harm to the body if you are someone who doesn't seem outwardly drunk, when in fact, fairly intoxicated.


EDIT/NOTE: ALCOHOL AND BREAST CANCER

Alcohol is turned into a known carcinogen in the body, acetaldehyde which damages DNA. This is news to me. It is also believed to be the cause of hangovers. 

Additionally, sugar is something cancer loves, and alcohol is a kind of sugar that is used in the body the same way as any. So regardless of how busy my liver has been, my only regular intake of sugar, as I am not a sweets fan at all, nor a big bread or carb eater, has been alcohol. A thing of the past for me now. 

Among the things told to me to the day of prognosis were "if you are going to get cancer, this is the one to get" and that it was a "sleepy cancer", (that did however, definitely need removing, along with radio therapy afterwards). I sincerely hope they are right.  But this will not be known until after the operation, and I am afraid they were "sugar coating" it, as perhaps is part of their job description to go easy on people? This is however, only a provisional staging, based on what is currently known from samples.

During the removal of the cancer there will also be a SNL, a sentinel lymph node biopsy, which is standard practice and a very useful diagnostic method. I believe I will wake up with either just one lymph gland removed, or many (or possibly all), if any cancer migration is found in the sentinel (first) lymph node - the first one to drain from the area of the tumour.  This is tested with a radioactive dye, injected into the site of the cancer 24 hours prior at an Epsom Clinic. The next day during the operation another kind of tracer dye is injected and between these two the site's corresponding lymph node can be found (98% of the time), which is whipped out and examined, with a decision to remove more, for further testing if any stray cancer cells are found. Lymph nodes themselves filter the non blood liquids of the body and even try to trap cancer cells (and do). Thus sometimes they become lumpy with cancer cells but are also a kind of "guard" or first/second defence.

My cancer is 1.5cms across, about 8 cms above the nipple in my right breast, a very common place for invasive ductal carcinoma (IDC), which is what I have, along with an in situ kind called cribriform - its not uncommon to have a mix of kinds.  The recommended surgery is lumpectomy, which is the same as a partial mastectomy, often described as Breast Saving Surgery, which means they feel that they would rather save the breast with the possibility of the cosmetic outcome (cosmesis) being reasonable enough to not suffer too much loss of body image.  So I gather from this, they mean it shouldn't be too ghastly looking. Its fairly new to do this, instead of mastectomy, which is an option I have. The outcome of mastectomy with no radiation or lumpectomy plus radiation therapy, is on a par with each other. If lumpectomy is chosen then radiation is a must.

As the breast in question is the bigger, the nurses said (they may have been surgeons!) "we can do something with that" and "breasts are made of fat and it can be pushed around".

So this is my diary of knowledge, thoughts and prognosis so far. I guess I will become something of an expert. I knew little before the 13th of this month. I couldn't find a lot on the web about this, just horrible lengthy, medical speak links, aside from the recommended ones that came with the literature given to me that day, which were fine, but those not enough detail for me.  


DID I FEEL IT HAPPEN? FROM IN SITU TO INVASIVE CARCINOMA

I had another recall today.  A bit less than a year ago in the late afternoon I felt a peculiar reasonably painful sensation in my right breast. It was a feeling I have never had before, or since. Kind of like an itch I couldn't scratch deep inside the breast, a radiating, throbbing feeling, a little like a bruise happening in there, or in fact, something bursting, when I think back now. I am wondering if this is the day that the carcinoma In Situ (considered Stage 0 cancer and precursor to Stage 1 invasive) which must have been present before my current Stage, broke out of the duct, and invaded the nearby area? Perhaps the breaking out of the duct is something that would cause discomfort and unusual pain? I would think so and I clearly recall the feeling, it was absolutely unique, but it was gone by morning, and soon dismissed.

If anyone is reading this, I hope perhaps they will just keep in mind that even though they say breast cancer symptoms are slight or none, I had two, which I overlooked, and I am considered early stage. 

ANY CHANGE should be checked out, especially "wierd-ness", as was my case.

I always assumed tumours would have to be quite large to distort a breast or turn a nipple inwards, sideways or whatever, but this is just an assumption I had made, which was completely wrong. My nipple is turning slightly more to the right - all forcing in the same direction, caused by a knobbly lump just 1.5cms across, which is still very hard to find and feel, even though I know where it is! 

In New Zealand, health services try to get patients in for breast cancer surgery within 20 days from diagnosis. Mine will be more like 50, a combination of accommodating some of my work and the nurse that books the date being on holiday.  I was also told most people's surgery dates got blown out from Christmas just gone because they were two surgeons down in the Auckland area.


A NEW DAY: 

In the meantime I am enjoying what I still currently have, more than ever, as I have taken up more regular exercise, which peps up my mood, reduced my calories (I now weigh 63kgs since diagnosis, a loss of 3kgs) and am using the prognosis for positive motivation. I shall never drink again. It holds no interest for me whatsoever.  And just 3 or 4 drinks per week(!) triples the chances of breast cancer returning. As it is, having breast cancer automatically increases my chance of getting cancer again in the future, at any site, tenfold.  I am also living on pretty much zero sugar. Sugar feeds cancer, those cells apparently use 15 times the blood glucose normal cells use. There is a ketogenic diet that is rumoured to be effective for starving cancer tumours, where nothing is eaten than can turn to sugar and supposedly the tumours just commit suicide. No fruit, no bread, pasta, grains of any kind. The body makes sure the brain has enough glucose from stored fat, with the rest of functions prioritized behind that, making the greedy cancer cells last in line to receive their fix.

In three weeks the tumour will be removed and examined in detail, in slices, and I want to know everything. I have no idea how debilitating it will be, and for how long, or the visual results of the surgery.  My surgery will include a "hook wire" put into the tumour, placed there prior to the operation, guided by an ultrasound picture, to guide the surgeon to the correct area for the wide incision he will make to remove the cancer and a margin, along with a lymph node biopsy to assess any possible spread. The hook wire will be placed while a local numbs the area. Then apparently I drive five minutes to the surgery unit. 

Once fully healed (6-8 weeks) radio therapy begins and I will almost most likely be prescribed five years of tamoxifen to cease my hormonal production, thus going quickly into menopause. This is the treatment I am bummed out about the most. Such horror stories of menopause and I have no hint of it at all currently. Osteoporosis is something hormones protect us from too.

I had a pretty good experience last August getting the hysterectomy, and my childhood fear of hospitals is almost completely gone. That was a six week recovery time and breast surgery is much less, at two weeks, so perhaps that operation at least, prepared me for this one, which has more life threatening connotations, but is a less major operation. 

I am truly grateful for free mammograms and this early, but invasive, discovery. I drudged along to my free mammogram, but I have certainly changed my tune now. 

The main thing I want to say though, is that I still can barely feel the malignant lump, maybe, just. . . but its effect on my breast overall is much more obvious than the lump itself - it never occurred to me this is how breast cancer is?

But hullo, I did have another one to compare it to - ladies, we have two of these things, if one seems to have a mind of its own . . . . .



- Pauline








6 comments:

Tracy said...

Thank you for sharing what must be a stressful & frightening time. Your positive attitude will get you through this with flying colours.

donna said...

Thank you for sharing your experiience. I wish you all the best on your journey. A friend of mine is going through this at the moment she is on Facebook and is sharing her daily journey you might be interested to have a look she is a kiwi living in Perth ..... Evana Willis is her name.......

Lyn said...

Thankyou for sharing your story... love your honesty :)

Jackie said...

Thanks for sharing :)

Al Murray said...

Hi Pauline,
I'm sorry to hear that this has happened, but was heartened by your positive attitude and your obvious research into what is really going on with your body. Rather enlightening and something I will share with my wife, Lynda. She, tto, approaches 50 and likes a glass of wine (or two).
Keep calm and carry on - all the best with the treatment,
Cheers,
Al

Pauline said...

Thanks Al,

Not long to go now til the op. No one should blame themselves for getting breast cancer and I'm not going to either.

The alcohol is merely a link, the causes are still mysterious and multiple combinations, unlike, for example, lung cancer which is clearly caused by smoking in the high 90 percentages.