Metastatic Breast Cancer Awareness Day

A reminder – October 13 is National Metastatic Breast Cancer Awareness Day.

October 13 is the ONE day of the WHOLE Breast Cancer Awareness Month that calls attention to those who have died (40,000 annually) and the 150,000 LIVING with this incurable disease in the US.

Here are some important facts from: http://mbcn.org/…/

13 Facts Everyone Should Know about Metastatic Breast Cancer

(click HERE to download a flyer you can print and distribute)

1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life.

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.

3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.

4. Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life.

5. About 6% to 10% of people are Stage IV from their initial diagnosis.

6. Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

7. 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer.

8. Young people, as well as men, can be diagnosed with metastatic breast cancer.

9. Like early stage breast cancer, there are different types of metastatic breast cancer.

10. Treatment choices are guided by breast cancer type, location and extent of metastasis in the body, previous treatments and other factors.

11. Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of their disease, some will live long and productive lives.

12. There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease is unique.

13. To learn more about National Metastatic Breast Cancer Awareness Day on October 13 and to access resources specifically for people living with metastatic breast cancer and their caregivers, visit www.mbcn.org.

 

Advertisements

Off on a tandem!

You can see from my blogroll on the right that I follow a large number of blogs, most of them Breast Cancer related.  Keeping up to date with the diverse and rich postings might take time but never fails to move me. I am humbled and inspired, I laugh and cry, I am inspired and challenged.  Through this I have “met” some phenomenal women (and a few men too, of course, but this domain is very much dominated by women).  Everyone has a powerful story to tell and there is an incredible level of spirit, intellect, snark, feist and debate.

When I first started this blog, it was an outlet to help me process the extreme stuff I was being faced with, and focused mainly on the immediate.  While I was in the thick of treatment in the months following diagnosis it formed a detailed account of diagnosis and treatment in my rather unusual setting.  Blogging was a lifeline.

Over a year later and in a different space, when I step back and look at it, I find that the blog has a different character too.  Now I find there are still some updates, but my ramblings are more reflective and often trying to make sense of life lived through the Breast Cancer lens.  I find that many of my thoughts are inspired by the rich material there is in each other’s blog posts. I love the variety in our posts, in our approaches and styles, reflecting how different we all are and our experience is.  I have special “thinking time” when I let my mind develop some of the thoughts which are stirred.  I love to let my thoughts develop during my daily swim, though it is a bit difficult then to note down any nuggets which I really want to remember, so I find myself repeating and mentally refining these ideas as I plough up and down the pool, mixing ideas with the number of lengths swum.  I also love that time after I put my book down at night and switch off the bedside light before I fall asleep for thinking creatively.  That is also a challenge in terms of somehow recording these ideas as they often disappear into a dream world rather too quickly!

So recently, when I read about Terri’s Big Dream, my mind started firing with a barrage of random ideas and thoughts.  Terri dreams, (which I believe means plans and will find a way of doing) of establishing a non-profit to help other cancer survivors volunteer internationally.  A vey exciting project, and one which we will connect about to chat and perhaps brainstorm a bit.

My mind however, went careering off on its own “tandem” ( as I love to say 😉 ) It made me think of the very different experiences which women have, depending on where they happen to be.  There can be quite a variation within countries, even where there are policies and guidelines such as the NICE guidelines in the UK. Living in Asia has given me an acute kind of better sweet cancer experience.  I personally have had an incredibly sophisticated treatment and care plan, with state of the art medical facilities and practice, the latest medication and no waiting time for surgery and results.

Very many are not nearly so fortunate though.  Facilities, diagnostics, pathology can be limited and medical specialists not easily accessible.  The costs of care can be completely out of the reach of many.  There but for the grace of God, go I indeed.

There is another aspect though which I find fascinating given the level of sophistication to the debate and dialogue regarding Breast Cancer demonstrating that many women are empowered and informed with regard to their treatment and care.  I regularly stand in awe of many of my co-canceristas when I read complex analytical discussions, thought provoking and carefully researched posts, powerful personal accounts and challenging articles.  There is a very strong Breast Cancer lobby driven by articulate, intelligent and dedicated people, passionate about the plethora of issues.  There is a strong challenge to the pink marketing and lack of progress in research and debate.  There is a drive to move beyond awareness raising and address the lack of research, particularly into metastatic cancer.  This is critical, there is no question of it.  Too many are affected by metastatic disease.  Cancer is still stealing so many.

However, I would like to just stick my neck out a little, and share my thoughts about awareness raising from a different perspective.

After I was diagnosed, I returned to Yangon and buckled down for the long ride of treatment.  I was blown away by the amount of support and help from friends and colleagues here. Then one day I received a phone call from a colleague.  She was very upset about my diagnosis and wanted to send her love and prayers.  It was incredibly touching, and bear in mind I had only been in this new job (and country) just over three months.  Then she told me that everyone was really surprised that I had been diagnosed with breast cancer.  Apparently, it is believed to be a “spinster” disease which only (or usually) affects women who have never married or had children here.  I was totally taken aback and responded quite strongly.  Many traditional beliefs have their origins in in a remote truth and I can kind of see where that might have roots, after all apparently having children at a younger age and breast feed your babies are seen to be factors which relate to reduced likelihood of developing breast cancer.  But I was shocked that the belief was so strong and I immediately vowed to raise awareness as widely and appropriately as I could do in my local setting.

To me this is a reminder that there is and clear and pressing need for awareness raising in a number of contexts, and this is not limited to the example I have shared here.

Nor does this mean that the question of research and particularly understanding and treating metastasis should come later.  It is not an “either/or” question.  There is no doubt that there is an urgent need to shift emphasis in the more advanced contexts, while seeking contextually appropriate ways of raising awareness where this is clearly needed.  My aim here is to convey the message that there is enormous diversity in levels of awareness and debate and I for one need to be reminded of that and the role I can play in it.

I am intrigued to hear how Terri’s big dream develops and while I know that the direction that my mind took does not reflect how the dream will come to life, it just shows how much we inspire each other in every sense.

 

A Confession

It is the day after the checks.

I have been a bit silent in the run up to these checks, and there is a reason for that.  I have a confession to make.

I have been doing my usual waltz with the Captain (Paranoia) and had fleeting concerns about the usual aches, twinges lumpy bits and itchy spots.  But 2 weeks ago I woke in the night with a very strange pain near my scar area.  It felt like some kind of severe sting, and rather reminiscent of shingles-like pain.  Yes, it really was painful – enough to wake me up.  I hunted around to see what was causing this, and found a slightly raised area, which was extremely tender and painful.  It felt a bit like a very nasty sting, but there were no other marks or indication that it might be a bite or sting.  Just one isolated little spot of bother.

Of course, that made me worry but not unduly.  After all, living in a tropical climate, there were likely to be all manner of weird little beasties which could cause a bite.  But it lasted for a few days, and I could feel a tiny lumpy area.  Given its proximity to my mastectomy site and scar, and the fact that it persistently stung, the worry grew and I found myself consulting Dr Google about skin mets.  Dr Google kindly provided me with a variety of images, most of which did not resemble my little “wirple” but a couple did look frighteningly similar.  So then I started searching the Breast Cancer sites for more information.  There is not a great deal of  information about skin mets, but there is a little.  And the thing that freaked me out, was that there was a consistent description of one type of met as feeling like “a grain of rice”.  And guess what?  My little wirple felt just like a small grain of rice.  Uncooked of course!

I obsessively checked the wirple and willed it to go away.  Although it did start to ease a bit in a few days, it was still very painful so I dragged it off to see Dr H.  I knew my checks were imminent, but needed to have it looked at by a real Dr and not Dr Google.

Dr H had a good old look at it.  When I mention that she had a magnifying viewer on her forehead and a searchlight that could illuminate a large village, you will get a sense of the scale of this wirple.  She had a very thorough look and examination, and found nothing conclusive.  While it didn’t scream skin mets, nor could she totally discount it being something worrying.  She of course stressed that as a General Practitioner she would not be equipped with a great deal of oncology experience.  She then brought out a reference book on skin conditions and we went through this together, looking at the various example of skin mets from breast cancer.  Most of the images did not correspond to my wirple, but as Dr H said, she was not able to discount it.  She was glad that my checks were within 10 days and the Drs W and W2 could run their weathered eyes over the wirple.

So I left the surgery, feeling mildly better (because it was not a clear “OH MY GOODNESS THIS IS VERY WORRYING” finding) but still anxious.  And anticipating a biopsy in all likelihood to check it out further.

I settled into the routine of willing the days to pass so that I could get it looked at by the specialists, and willing the days not to pass in case it was nasty.  Sleep was highly evasive and I spent many hours trying to seek out puzzles and distractions, but without great success.  It was horribly reminiscent of the time between discovering the original cancer, and being diagnosed.

The thing that was most revealing though, was my reaction in terms of sharing this.  Similarly to the situation when I first discovered the limp, I found that I did not want to worry close ones.  It is bad enough lying awake worrying about your own stuff, without imposing it on others.  So I kept quiet about it with the exception of a few people back in Yangon.  And the rationale for sharing it with these people was based on the fact that I had hardly mentioned the original lump  to others, and the result was bad.  So if I did mention it – then perhaps the result would be ok.  I was meant to be planning home leave, but found it impossible to book anything other than my return ticket to the UK, just in case I was tempting fate.

Not mentioning it to family did mean that I was not able to blog about my worries.  And that was quite a revelation to me.  I have been used to the blog’s function as an outlet, and as a way of processing what goes on in my head.  It was very hard to keep quiet about this.  The fact the the laptop decided to choose that very time to crumble probably helped as it meant that blogging time was even more limited.  It made me realise that there is a hierarchy of priorities in communicating my worries.

So that is my confession.  I have been keeping a secret about the level of worry and fear caused by this wretched wirple.  Until Today that is.  And the reason I can finally talk about it is because I am in Bangkok and had my checks yesterday.

As always it was a long day, helped enormously by the fact that my friend and I had planned and schemed to have our checks together and support each other (read cancer rebels!)  We stayed in a suitably swanky place with spectacular city view.  Well, from the 41st floor you would expect good views, along with the vertigo.  And the inability to go out on the balcony that high up!

We headed to the hospital together and re-grouped between the various tests and appointments.  After the usual bloods etc, I saw Dr W2 in the late morning.  Sitting in the waiting area, was even more painful than usual knowing that he would look at the wirple, tell me how my blood work was and generally tell me how my future was looking.  The first thing he said was that I was looking well.  I told him about the wirple and he examined it.  His verdict was a wonderful “Pah – that is nothing”!  I said that I had been terribly worried, and he said it is absolutely nothing sinister.  He noted that my tumour markers were down a bit further (now well within the normal range) and all other blood work good.  He examined me carefully and found nothing at all untoward.  I sat back down at his desk as he shared his verdict.  “No relapse”.  No Relapse is NED in disguise.  and JUST what I had wanted to hear, fearing I would not.

So by lunchtime I knew that the wirple was a nuisance and not a major problem.  I headed up to the oncology ward to get my port flushed, and after a little obstinacy even the port cooperated and produced a blood return!  I asked the nurse not to put the usual plaster over the puncture mark to avoid aanother nasty reaction and she of course obliged.  The oncology nurses are indeed angels.

There was just enough time to scoot across to do some urgent retail therapy.  I should perhaps add that the day before the tests I had pre-empted my checks by indulging in a replacement laptop.  (Which is STUNNINGLY beautiful!  Really, it is.)  So I had to get a couple of “essentials” to make sure it was feeling valued.  Then I hurtled back on the sky train in time for my appointment with Dr W, the Surgeon.  He looks at things differently to the way that Dr W2 does.  Understandably, one looks through the oncology lens and one through the surgical lens.  Dr W2 floored me briefly when I told him I was planning to travel to the UK, by asking if I would be returning for my treatment.  My stomach went into free fall, when he clarified.  He thought I was returning to the UK permanently and meant care rather than treatment.  It’s amazing how the subtle change of a word can take on a completely different nuance.

He examined me carefully too, working at Twang Arm and again saying that my arm movement was still very restricted and the cording quite bad.  I think that he is keen to have a go at Twang Arm with his surgical instruments at some point but that it does not warrant its own surgery.  Again I dressed, and sat down at his desk.  He used slight different vocabulary as he wrote his findings “No recurrence” beside some interesting depictions of my scar and arrows pointing to various bits of Twang Arm and its obstinacy.

He asked when I had had my last mammo and I said that it would be a year come October, so I was expecting the Big Check to be next.  He agreed and ordered the necessary scans.  This time I will have an extra ultrasound of my liver for a treat.  He is not sure about another CT scan considering that I had an additional one at the 6 month point, so we’ll see what Dr W2 judges to be needed.

But that is for another day, for the time being I was released into the heavy, humid air and torrential rain to re-group with my friend who had been going through her processes.  It was late in the day when we collapsed, exhausted and emotional, ready to bubble.

Bubbling had been the pre-agreed strategy.  If the checks were not good – it would be appropriate to have some bubbles.  If they were good, then bubbles would be in order.  However, there was another clear bubbling activity.  We talked about how draining the whole process is.  And the fact that while it is an enormous relief to hear that the checks have this time been kind, there is not a sense of euphoria.  There is just a massive exhaustion and overwhelming desire to weep. We had had grand plans to eat somewhere decadent but that plan rapidly evaporated particularly given the exhausting day that my friend had had.

She of course had known about my wirple.  We have this instant communication when something crops up that only a cancer exposed mind can understand.  We both had different stresses and anxieties, but it was enormously helpful to go through the checks in sync.  This is something that we were able to do here, and I know that it is not possible in most places.  However, as I have mentioned before, our medical treatment is first class on the world stage of cancer treatment, but the softer side is not really in place.  So this support has been absolutely critical.

The day looked different in more ways than one than it had by nightfall, in every sense.

When I was in the lift this morning, the doors opened and a mother and young boy got in.  The little boy had a small backpack, with a bottle of water and probably  many other essentials for his forthcoming day in Bangkok.  I was suddenly taken back to the morning after my diagnosis.  I remembered looking at the people there and feeling a terrible sense of sadness.  I knew that these people were probably either on holiday, or business.  They were probably looking forward to the day ahead.  They had no idea that I had just been delivered the most life-changing message a few hours earlier and that I was in a completely different place to where they were.  I remember the isolation and feeling of fear, uncertainty and dread over what might be ahead.   But this morning, I felt a sense of kinship.  I too was looking forward to the day ahead and I could identify with the little boy’s excitement portrayed in his features.  I found that I was again in a different place to the one I was in after diagnosis, even though I could physically see the same building where I had been.

This means that tomorrow I am travelling to the UK, and so looking forward to seeing close ones.  I will try and avoid departure lounge gymnastics and do not dread going through immigration as I did last year when bald.

I am sorry that I kept you in the dark about the wirple, but I am very happy to be giving the confession and update that I am.