Health Update: Breast Cancer in Men
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Update, Tuesday 25th September 2018:


  • I've had an amazing Summer of dancing - it feels like I've been dancing non-stop all Summer, and I enjoyed every minute and every second of it!

    Having been to France for Gennetines 2018, I decided to have a go at learning to speak some French, so I started a beginner level French course this morning at Alliance Française Dublin. It's a raw beginner's course - the course number, 1.1, indicates the Level it's at.

    I greatly enjoyed my first day in "junior infants" and it looks like the course will be fun. There were a few round robin question, one of which was about how we punch in our time. When I mentioned that I taught dancing, the teacher translated it into French as "Professeur de Danse" - isn't that a posh-sounding title!

  • Coming back to reality for a moment, I got really great news during the Summer: the Oncology Professor responsible for my treatment told me that scans show that the cancer in my lungs has "shrunk significantly" - he credits this to the medication, but I think all the dancing certainly helped. In any case, it doesn't matter why it's shrinking, the important thing is that it IS SHRINKING!

  • It's almost worth getting sick, just to appreciate how great it is to be alive and well and able to dance!

  • The festival season is now over and our weekly classes are running again, everyone welcome, no experience needed, partner not required - for class details, click on one of the links on the ceili.ie Home Page, or on the links above.

  • I've been updating the Festivals section throughout the Summer - click here to see what I've been up to during the Summer.


Best Regards, see you all soon,
Pat




Original content of this page:

Health Issues:


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:
  • The good news is that the doctors think that they now know what caused the strokes.
  • The bad news is that they believe the strokes were most likely linked to the return of Breast Cancer which, after a fifteen-year lapse, has now spread to my lungs.
  • Additional tests were carried out to determine whether the cancer had spread further and, happily, the conclusion is that there is no significant additional spread, other than a few "spots" in the bones, which are being treated.

This is not lung cancer, but Stage IV Breast Cancer, which has spread to my lungs.
  • More good news is that my oncologist is confident that, with appropriate treatment, he can halt the spread of the cancer and minimise the risk of further strokes.

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.

Men Get Breast Cancer Too:

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:
  • A Mastectomy in late May 2003. Yes, it's still called a Mastectomy in the case of a man - the only reason it sounds odd is that we've all been programmed to think that only a woman could have a Mastectomy.

  • Then I had Chemotherapy, starting in late June 2003

  • Then Radiation

  • Then Hormone Treatment for 5 years

  • Then follow-up checks for 10 years

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
  • Towards the end of the embedded YouTube video, at counter 4:54, the commentary says "Being diagnosed with Breast Cancer is a very frightening time for the patient and for HER entire family" - it would be very easy to make this applicable to both men and women by instead saying: "Being diagnosed with Breast Cancer is a very frightening time for patients and for their entire families", but it seems as if the video was not checked before publishing it. Even though the Irish Cancer Society clearly knows that men get Breast Cancer, they allowed the term HER to be used, once again giving the impression that Breast Cancer is a "women's problem".
  • Further down the page, there is:

    • Although this can affect women at any age, it is more common as women grow older.

    • Invasive lobular Breast Cancer is uncommon, and affects about 10-15% of all women with Breast Cancer. It can occur at any age, but more commonly affects women in the 45-55 year age group.


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:
  • Media:

    This irishexaminer.com article says:

    • Two out of three women with advanced breast cancer feel no one knows what they are going through and more than half found there is no support for their needs

    • While Ireland was not included in the survey of 1,300 women with advanced breast cancer across 12 countries, the Irish Cancer Society said the findings match what women with advanced breast cancer are telling them.

    • The Novartis Oncology- supported survey Count Us, Know Us, Join Us found more than three quarters of women with advanced breast cancer looked for information specific to their needs, but 55% found that the information was usually about early-stage breast cancer.

    • Clinical and educational psychologist and ICS facilitator, Áine Melinn, said women first diagnosed with breast cancer instantly became part of a vibrant breast cancer community.

    • “The findings of the global survey match what women with advanced breast cancer tell us directly at the ICS,” she said.

    • Around 700 women are diagnosed with advanced breast cancer every year in Ireland and up to 3,000 women could be living with the disease that has gone beyond the early stages.

    • Over the summer, the ICS found that emotional support and information were the two areas most important to 23 women who attended their Living Life programme for people with all types of advanced cancer.

    • The women said they could feel very isolated and that they needed special support in expressing their feelings with their partners and especially their children.

    • The women also wanted to meet other women with advanced breast cancer for peer support, especially when newly diagnosed.


  • Pharma:

    When the cancer returned in March 2018 and spread to my lung, my Oncologist at the Hospital prescribed a Goserelin/Zoladex injection, the information sheet for which is headed Goserelin - for Women.

    The Oncologist who wrote the prescription is a leading expert in Breast Cancer and I have full confidence in his knowledge and expertise. He would not have prescribed it for me if it was intended only "for women". Assuming that Goserelin is intended for both women and men with Breast Cancer, then it makes no sense to have "for women" in the headline on the information leaflet. This is confusing, embarrassing, and insulting to men who are prescribed the injection. I asked my oncologist to contact the drug company to point out that this medication is also prescribed for men.

    Update: October 2018: There is now also a web page untitled "Goserelin - for Men" - I don't know whether this was as a result of my request to the drug company, via my oncologist, to but I'm pretty sure that this page did not exist when I did extensive searches, earlier this year. In any case, I'm delighted that information is now also available for men receiving this treatment.

    International:

    Internationally, the situation is just as bad. If you do a search for "Breast Cancer" on your favourite search engine and then search within the results for references to "women", you will see that most websites take the lazy approach and write their text for "women with Breast Cancer", rather than using the more inclusive "people with Breast Cancer", or "Breast Cancer patients".

    The following is just a small sample of international websites which either completely ignore, or do not deal adequately with, the fact that men get Breast Cancer:
    • breastcancercare.org.uk says
      • Meet other women with a secondary diagnosis and get information and support ....

    • healthline.com says:
      • Some women will live for many years after diagnosis of stage 4 Breast Cancer.
      • Some women will benefit from drugs that block estrogen and progesterone from promoting cancer growth.

    • breast-cancer.ca says:
      • Most of the statistical data on Stage IV or metastatic Breast Cancer is from those women presenting at diagnosis. According to the Metastatic Breast Cancer Network (MBCN) in 2012 new cases of Stage IV Breast Cancer were between 13,776 to 22,096.
      • Breast Cancer can return at any point after the initial diagnosis and treatment. This is one of the most anxiety-provoking factors for many women after Breast Cancer diagnosis and treatment.
      • Many women who have been initially, successfully treated for breast cancer feel that they are living with a time bomb.
      • Indeed, it has also been suggested that research into the rare group of women who survive many years with metastasis may be of equal importance to understanding recurrence and patterns of Breast Cancer.
      • In general, the overall survival of women with Breast Cancer decreases as the size of the tumor increases.
      • Although this medical study shows the relevance of tumor size and survival rates, interestingly, the impact of tumor size on 15-year survival was greater in women with node-positive tumors.
      • This means that Breast Cancer screening is equally important for women after regional spread.
      • However, there were no differences in survival rates between those diagnosed at Stage IV and those women who had metastatic spread over 2 years after an original Breast Cancer diagnosis and treatment.
      • However, there are still over half a million deaths worldwide from Breast Cancer and over 90% of these women die of metastasis.
      • De Novo metastatic Breast Cancer: This term refers to women who are Stage IV at the initial diagnosis of Breast Cancer. That is, the cancer has already spread to other parts of the body. De novo metastatic Breast Cancer accounts for only around 6% of cases at diagnosis in the US.
      • As we can see, the 5 year survival rate for women diagnosed with Stage IV Breast Cancer was 22%.
      • A recent study found that 37% of women survived for three years after a Stage IV Breast Cancer diagnosis, although some women do survive longer.


    • breastcancer.org says:
      • The researchers looked at the health histories of almost 3,000 women who didn't have early-stage Breast Cancer come back during the 5 years after diagnosis and initial treatment
      • Ten years after initial diagnosis and treatment, 11% of the women in the study had a late recurrence. At 15 years after initial diagnosis and treatment, 20% of the women had a late recurrence.
      • This research strongly suggests that ALL women diagnosed with breast cancer need to talk to their doctors about steps they can take to reduce the risk of both early and late recurrence.


    • oncnursingnews.com says:
      • Some of these women thought they were cured when they surpassed the 5-year mark and were even more confident that cancer would not recur when a decade had passed.
      • The risk of distal recurrence is the same for women who had a mastectomy or a lumpectomy plus radiation therapy.
      • Women diagnosed with Breast Cancer at a younger age have a greater chance of recurrence than those diagnosed at an older age.
      • women under the age of 50 are more likely to experience a local recurrence than women over age 50.
      • Women with BRCA1 and BRCA2 gene mutations are also at a higher risk for contralateral Breast Cancer after having been diagnosed and treated for an initial breast tumor compared with those who do not have these mutations.
      • Although the majority of Breast Cancer recurrences are the same histology and hormone receptor status, for some women, the recurrence is different from the initial Breast Cancer diagnosis.
      • It’s not uncommon for women who were ER/PR-positive to recur with Breast Cancers that are ER/PR negative, or for tumors that were HER2 negative initially to show evidence of HER2 at recurrence.


    • healthline.com says:
      • There’s no cure for metastatic Breast Cancer, but it’s certainly treatable. Some women will live for many years after diagnosis of stage 4 Breast Cancer.
      • Some women will benefit from drugs that block estrogen and progesterone from promoting cancer growth.
      • The first symptom of Breast Cancer for many women is a lump in their breast. However, many women have breast lumps and nine out of ten are benign. That means they are not cancers.
      • Younger women have denser breasts, which means a mammogram is not as effective at detecting cancer.
      • Many women experience breast pain and worry that it is a sign of Breast Cancer. However, breast pain is not generally a symptom of Breast Cancer ...


    With a small bit of effort, all of these sentences could easily be re-written so that they apply equally to all sexes.


That's just a small sample of the sites I came across, if you search for "Breast Cancer", you'll find many more.

Privacy:

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:
  • If you ever raise funds for a Breast Cancer Charity, you could stipulate that the funds must be used to employ professional proof-readers to check the content of booklets, web pages, leaflets, etc. to verify that the text applies equally to all sexes.

  • If you see non-inclusive Breast Cancer literature anywhere, you could take a marker to it, modify it, and send it back to the organisation that produced it, with a request that they amend it.

    If enough people do this, the combined effect could make a real difference and we could save many men's lives, without in any way diminishing the effectiveness of the message for women.


Outlook:

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.

The Future:

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:
  • It's either going to kill me, or it's not.
  • If it's going to kill me, I'll know well in advance.
  • I'll take whatever medicine the doctors prescribe for me and I'll follow all the doctors' advice.
  • Other than that there's nothing I can do to influence the outcome, so I'll put it out of my mind and get on with living.
It's taken fifteen years for it to progress to Stage 4 and, now that it's at Stage 4, I intend to take exactly the same approach.

Many Thanks:

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.

Addendum: 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:
  • Stroke,

  • Cancer,

  • Deep Vein Trombosis (DVT).


There must be a quare amount of chemicals surgingg 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,

Pat


Up-to-date, as of: Tuesday, 16th October 2018


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Health Update: Breast Cancer in Men