|Health Update: Breast Cancer in Men|
Update, Autumn 2018:
Original Health Update, Spring 2018 - Men Get Breast Cancer Too:
Sorry to bore everyone with details of my health issues, but I've had lots of emails from people on the ceili.ie Mailing List, asking to be kept informed.
Most people on the ceili.ie Mailing List will know that I had two recent strokes, one in class, on 12th December 2017, and another one at home, on 26th February 2018.
After an extensive series of tests, spread over multiple departments in two different hospitals, I now have the results of these tests and the results contain both good news and bad news:
This is not lung cancer, but Stage IV Breast Cancer, which has spread to my lungs.
It will be news to people who know me that I had cancer 15 years ago and even more so to hear that it was Breast Cancer - it was also news to me 15 years ago to learn that men get Breast Cancer.
In May 2003, I was diagnosed with an aggressive tumor, at Stage IIIC, which had spread to my lymph nodes (18 diseased lymph nodes were removed).
At that time, my mother-in-law was 80 and we didn't want to tell her, as we knew she'd worry about me if she heard that I had cancer. To avoid the risk of her hearing it from someone else, we decided not tell anyone at all, not even our respective siblings.
It was a complete shock to me when I was diagnosed with Breast Cancer in May 2003 - like most people, my understanding was that only women could get breast cancer, but that's not the case, men get Breast Cancer too - in fact, about 1% of Breast Cancer cases every year are in men and, because men don't suspect that it could be Breast Cancer, it is often at an advanced stage when detected in men. As everyone knows, early detection and treatment increases survival chances, so this lack of information is not a trivial matter.
The medical profession knows that 1% of Breast Cancer cases each year are in men. The pharmaceutical companies know it, the cancer organisations know it and the media know it, yet there's virtually no discussion or publicity about the fact that men get Breast Cancer - this, in my opinion, is an absolute disgrace.
Sadly, my much-loved mother-in-law passed away last Autumn at the age of 95 (having danced "Shoe The Donkey", her favourite dance, not long beforehand, at our son's wedding!). While we would all, of course, much prefer if "Nana" was still with us, I am relieved that I never had to tell her that I had cancer. I now feel free to draw attention to the lack of information about the fact that men get (and die from) Breast Cancer.
Diagnosis and Treatment:
Those organisations and websites that do publish the fact that men get Breast Cancer generally refer to it as "Male Breast Cancer". Personally, I don't like the term "Male Breast Cancer", as it implies that it's somehow a different disease to that women get, but it's not - Breast Cancer in men is exactly the same as Breast Cancer in women. For example, in my case I had:
This is exactly the same process that a woman would go through.
In my case, a major focus from the outset was to make sure that I'd be fit and ready for the Willie Clancy Summer School 2003, which starts in Miltown Malbay on the first Saturday in July and where I always dance every set, afternoon and evening, in The Armada Hotel each year. My operation took place on May 26th 2003, which meant that I had just over a month to get the wound healed, muscles re-attached across it and do intense physio to get mobility back into my left arm, so that I'd be ready for movements like the "ladies chain" and the "wheelbarrow" at the ceilis in The Armada.
To keep myself fit after the operation, I started walking the hospital corridors as soon as I could walk again. One of my favourite songs is Eric Idle singing "Always Look On The Bright Side Of Life" from Monty Python's highly irreverent film "The Life Of Brian". I walked up and down miles of hospital corridors, with "drains" still attached, whistling the tune of "always look on the bright side of life". The timescale was tight, but I made it to Miltown Malbay and danced every set in The Armada, afternoon and evening, as usual. I had to make one concession though: I was due to have a Chemotherapy session on the Friday of Willie Clancy Week, so, on Friday morning, I headed back to Dublin for Chemo, and reluctantly missed the ceili in The Armada that Friday afternoon, but I was back in time for the Friday evening ceili and continued to dance every set in The Armada until the wrap-up ceili on Sunday afternoon, after which Maureen & I went for a meal and then onwards to Gleesons of Coore, an old-style pub, where, at that time, locals met for a "hooley" every Sunday night, and we danced The Caledonian several more times in Gleesons (Regrettably, Gleesons is no longer in business).
Amazingly, on our way back to Dublin on Monday we parked up at Dunkerrin to have lunch in the camper and, during that stop, my hair fell out in clumps - if that had happened a day earlier I could have left trails of hair on the floor in The Armada and in Gleesons!
After the Chemo, I started on the Radiation, in St. Luke's, Rathgar. One of the doctors there asked me how I was feeling and, when I said I was keeping a positive attitude, he responded by saying "you know, there's no evidence that a positive attitude changes outcomes"! - I reckon that if there's no evidence it's because no one ever looked for such evidence! With the single exception of that unhelpful comment, I have nothing but praise for the dedication, compassion and professionalism of all the hospital staff with whom I interacted during my initial stay in 2003 and again now, in 2018 - they all do an absolutely fantastic and amazing job and I will be forever grateful to all of them.
I feel that my positive attitude played a role in causing the cancer to stay hidden for 15 years, resulting in me seeing my two children get married and having the great joy of participating in the lives of our four grandchildren.
At that time, I was teaching one Set dancing Class, in a secondary school hall in Churchtown. My wife, Maureen, took over the class from September until Christmas and I returned in January 2004, sporting a neat new crew-cut hair style!
The treatment I'm currently on is, as far as I understand, a form of Chemotherapy, which might also cause some or all of my hair to fall out. This time around, I plan to continue teaching, so long as I feel fit enough, bald head or not!
Information about Breast Cancer in Men:
At the time that I was diagnosed in 2003, there was little or no information available about the fact that men get Breast Cancer. Things have improved somewhat in the meantime, but there's still a long way to go. Some cancer organisations now publish information about Breast Cancer in men, such as:
These pages are useful IF you already know that men can get Breast Cancer, but, if you don't already know that, then these pages probably won't help, as they are unlikely to show up in search results if you do a search on your favourite search engine for just "Breast Cancer":
Even though these organisations know about men getting Breast Cancer and they publish some information about it, most of them still fall down when it comes to fully integrating that information into their general cancer literature, for example:
The Irish Cancer Society's web page on Types of Breast Cancer includes some information about men getting Breast Cancer (e.g. Each year it affects about 3,000 women and 20 men in this country, and there's a link the on left to the "Male Breast Cancer" page), but the overall content, in my opinion, gives the impression that Breast cancer is a "women's problem", for example
Media and Pharmaceutical Companies:
It's not just the cancer websites that treat Breast Cancer as if it was purely a "women's disease", the media do the same, as do Pharmaceutical companies. These are just two examples, if you search for "Breast Cancer", you will find many more:
That's just a small sample of the sites I came across, if you search for "Breast Cancer", you'll find many more.
Those of you who know me well will know that privacy is important to me and it wouldn't be my normal style to talk about my medical issues in public like this - in fact, I'm very uncomfortable doing so. However, a number of class attendees asked to be kept informed about my recovery and I promised myself a long time ago that, if ever the cancer came back, I'd start a process to spread the message that men get Breast Cancer. This page is the first step in that process.
I hope that you will all understand when I say that I would prefer not to get involved in discussions about my health issues in class, or at ceilis. I'd prefer that we all just have fun dancing.
The Next Step: How YOU can help:
YOU could help with the next step, if you choose to do so, for example:
Hearing that I had two strokes and have cancer in my lungs might create a vision of me being wheeled in to class on a stretcher, wearing an oxygen mask! In fact, I'm in fine form, with no after-effects at all. To quote from another Monty Python film "I'm not dead, I feel fine". Since returning to class in early April, I've been doing two-and-a-half hours of non-stop dancing, three times a week, with no problems at all. I fully expect to be back in The Armada for the first week in July, dancing every set, afternoon and evening, looking out over the Atlantic Ocean, as usual.
To be honest, I don't know what the future holds for me. If I was to invest time in searching the internet for Stage IV Breast Cancer Survival Rates, I know that I'd find a wide variety of predictions for how long I'm likely to live. However, I have no intention of doing that. Instead, I intend to get on with enjoying life, like I've done for the last fifteen years. Life is short and it'll come to an end for all of us one day. I intend to use my remaining time, whether that be years, or decades, to focus on the two things that are most important to me: my family and set dancing.
There are four Breast Cancer stages: 1, 2, 3 and 4 (I think there may also be a pre-cancerous stage 0). Stages 1, 2 and 3 can be cured. Stage 4 can be treated, but not cured. Within Stage 3, there are three sub-stages, A, B and C. In 2003, I was diagnosed with Stage 3C, which meant that I was just a fraction away from Stage 4.
At that time my attitude was:
Finally, I want to thank everyone who sent me "get well soon" messages, from all over the world, by email and by post.
I especially want to thank Lee Doyle and I consider myself to be very lucky that Lee joined the class this year. Lee has extensive First Aid training and she knew exactly what was happening when I had my first stroke in class on 12th December. She promptly took full control and, among other things, kept me calm while waiting for the ambulance. She also strongly advised me to get my lungs checked out, when she heard my wheezy breathing, after I had returned to class following the first stroke - investigation of that wheeze led to the cancer in my lung being discovered and treated.
Progress So Far:
Information is now available for men who are prescribed prescribed Goserelin/Zoladex, whereas this information was previously only available for women - see Pharma section above.
I have written to The Irish Cancer Society and MacMillan Cancer Support requesting that they amend their online information to take the information given here on this page into account. The Irish Cancer Society responded to say that they are currently reviewing their published information and that they will take the contents of this page into account when creating new literature on this topic. I got no reply from McMillan Cancer Support.
If/when I become aware that any of the relevant information has been amended, I will update this page.
Feel free to contact any other cancer organisations and websites, in Ireland or abroad, to bring this page to their attention and to request that they amend their websites to make their Breast Cancer literature applicable to both women and men. But, for the moment at least, please do not contact any media organisations, such as newspapers, etc. I don't like the sensational way in which most media organisations report stories and I definitely do not wish to become part of any sensationalism - if/when the cancer organisations amend their information about Breast Cancer to make it inclusive of all sexes, then I'd see it as their job to inform the media.
Best Regards, see you all soon,
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Addendum 1: Hat-Trick of Ailments:
On the afternoon of Tuesday, 8th May, I noticed that my left leg was swollen and I went to see my GP. After examining it, he felt that it might be a clot. He said he'd write me a referral letter and advised that I should go immediately to A & E to have it investigated. I said: "but, I have a dancing class to give tonight." I proposed that I give the class first and then go to A & E after 10pm, but he said it would be better to go immediately, since a clot can move and do even more damage. It was after 5pm when I got home from the GP visit and, after considering my options, I reluctantly decided to cancel the class that night. There was no time to send out a notification, so I wrote a note explaining the situation, and stuck it on the front door of the school, on my way to Accident and Emergency.
As it turned out, my GP was right, it was a clot at the back of my left knee. So, I now have a "hat-trick of ailments" for which I'm being simultaneously treated:
There must be a quare amount of chemicals surging through my bloodstream at the moment!
By the way, in case anyone reading this might be seeking information of DVT, the hospital medical staff recommended the following two websites as reliable sources of information on DVT:
Best Regards and Happy Dancing,
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Addendum 2: AED:
Following my experience of getting a stroke in class, I did a First Aid course, bought a First Aid Kit and bought I have now also bought an AED (Automated Electronic Defibrillator), in case of possible future emergencies in class. The AED is one piece of electronic equipment that I hope I'll never need to use, but I felt it was best to have one nearby, just in case it's ever needed. I purchased a high-tech "View" AED, with an inbuilt video screen, which includes video clips of how it's ussed. An AED would not be relevant or helpful in the event of a stroke, but there's no way of knowing what the next emergency might be.
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I had an amazing Summer of dancing - it felt like I'd been dancing non-stop all Summer, and I enjoyed every minute and every second of it! Having been to France for Le Grand Bal de l’Europe 2018 in Gennetines, I decided to have a go at learning to speak some French, so, even before the ferry had docked in Rosslare, I was online searching to find out where was the best place in Dublin to learn French. The concensus seemed to be that alliance was the best place to learn, so I joined an eight-week beginner's course (level 1.1) at a cost of €199.00. I was very disappointed with the course, but I decided to give them second chance, so I registered for 1.1 again, on a different day, with a different instructor and, so far, this is going better than the last time.
Another Another student, Sonia from Brazil, told me about a brilliant online course called Learn French With Alexa and I subscribed to all 45 lessons of Learn French with Alexa.
With Alexa's help, I'm determined to be able to speak some French when we next visit France.
We have a very good friend in Paris and, when we met Agnès at Gennetines 2018, I declared (perhaps, foolishly!) that the next time we meet her, I would be able to speak some French and I would be able to explain (in English!) what the French were doing in my home village of Ballinamuck in 1798 - I'm sure this was drilled into me in school years ago, but I had no interest in history at that time and I didn't retain any of the details!
Alexa will help me to keep the "speaking French" part and I plan to, belatedly, do some research on the "Battle of Ballinamuck" in 1978.
As it turns out, I'll be back in France sooner than I anticipated. Maureen has a significant birthday next year and we're off to Paris, in January 2019, to celebrate. We won't see Agnès on this trip, so I'll still have a bit more time to get my few words together, before meeting her again next Summer. In the meantime, the January trip will be an opportunity to practice the (very) few words of French that I do have.
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