Why Mammograms?

A post by BreastScreen popped up in my Facebook feed today. For those from overseas, this Australian government initiative provides free mammograms to women, with a focus on those between 50 and 74 years of age.

The age restrictions aren’t arbitrary. They are based on evidence that this is the window where a mammogram is most likely to detect cancer. All Australian women within this group are offered a free test every two years.

Women between 40 and 50 are advised to talk to their doctor about whether or not a mammogram is advisable. They can attend BreastScreen for a free test if there’s a reason to do so, such as a family history of breast cancer, or a medical history that leads a doctor to conclude that a patient is at higher risk. This history might not be related to previous cancer or benign tumours. It could be that someone has ‘lifestyle factors’ like smoking, obesity or excessive alcohol consumption that put them at higher risk.

Mammograms are not routinely offered to women under 40 because the test is likely to be less effective. Breast density declines with age and it can be difficult to detect cancer using a mammogram in younger women. For women 75 and over, routine testing is no longer considered necessary. Generally, if you’re going to get breast cancer you will have developed it before this age. That’s not to say that women in this age bracket shouldn’t continue to practice self-examination and to request a test via their doctor if they suspect anything is wrong. It’s just that the incidence of cancer in this age group doesn’t justify the cost, inconvenience and small risk associated with testing.

Yes. Small risk.

It’s not uncommon to see any post about mammograms followed by at least a few comments recommending against them. The arguments usually state that the radiation is toxic and that testing may actually cause cancer. There are also concerns about ‘false positives’ which result in women receiving unnecessary and potentially life-threatening treatment, ‘false negatives’ where a woman with cancer is told she doesn’t have it, and a reliance upon research that is cited as evidence that free mammograms have no benefit. Here’s a typical article:

Why you shouldn’t have mammograms

This is another example of a very complex issue being dumbed down in pursuit of internet popularity. The truth is a lot more subtle. There’s the usual difficulty with any piece of research related to breast cancer; we’ve seen huge changes in treatment and technology in the last two decades. We now have lower radiation used in diagnostic equipment, better treatment following diagnosis and ongoing research that will continue to impact upon detection and treatment.

One of the greatest discoveries since the introduction of free mammograms and the subsequent analysis of data was that some early cancers seem to heal themselves. This is why the early detection of DCIS (ductal carcinoma in situ) may have previously resulted in treating a condition that would have gone away all on its own. But here’s the catch. Not ALL DCIS goes away on its own! If you were previously diagnosed and treated for DCIS then it could be that any treatment you had was entirely unnecessary. It could also be that this early treatment saved your life and your breast.

Research is now focused on figuring out which types of DCIS are likely to resolve all on their own. It’s hoped that in the future, doctors will be able to determine which cases need treatment and which should be given a bit more time to see if they resolve on their own. In the mean time, I would still be recommending screening on the basis that I’m not prepared to accept a dice roll when it comes to cancer.

Of course I need to declare a bias. BreastScreen detected four tumours in my left breast the very first time I had a free mammogram. This was not DCIS. This was full blown triple negative breast cancer. My tumours were doubling every three weeks and I was fortunate enough to have received my BreastScreen invitation at a Goldilocks moment; my tumours were just large enough to be detected but had not yet metastasised.

You should know that at the time, I was, to all outward appearances, physically fit. I was probably about 15 kilos over my ideal weight, but hardly obese. I was a non-smoker who enjoyed sharing a bottle of wine with my husband over dinner (before I discovered it was a category one carcinogen, just like cigarettes) and I regularly practiced self-examination after every menstrual cycle. I had no palpable lumps in my breasts but the mammogram found four tumours.

To say that this test saved my life is not an exaggeration. Without it, I would have had no indication that anything was wrong until the impact of the cancer spreading throughout my body became apparent. Triple negative is rarer and more aggressive than other types of breast cancer, with a lower survival rate.

You see this is my bottom line about research and data. None of it counts for anything much if yours is the life that’s saved. Here’s a link to one of the pieces of research that’s often cited when demonising breast screening:

Possible net harms of breast cancer screening

It’s always useful to go to the source when the internet scares you. The most significant thing about this research in my opinion is that they do not dispute the fact that mammograms save lives. Their argument is that screening also results in a reduction of quality of life in those women incorrectly diagnosed and treated because of the ‘months of psychological distress’ they experience. They also argue a reduction in quality of life for those whose cancer goes undetected.

I’ll deal with the last group first. If a mammogram did not detect your cancer then it is usually the case that you had no other evidence of cancer. Lumps, swelling, pain or any other abnormality of the breast would warrant further testing, including ultrasound and biopsy. The fact that screening does not have a 100% detection rate needs to be balanced agains the fact that mammograms save lives.

The over treatment of some women is a serious issue and there can be no doubt that waiting several weeks (rarely months) while you worry about a suspicious lump is definitely distressing. There can be no question that the research into reducing this type of event will greatly improve this situation. In the mean time I’d like you to consider things from a personal perspective. These are the possible outcomes from your routine mammogram:

  1. It detects a cancer that you didn’t know you had and this detection saves your life.
  2. It detects a cancer that you didn’t know you had and that cancer ultimately kills you. Treatment may or may not give you a few more precious months or years with those you love. Certainly early detection will improve your chances.
  3. It detects a cancer that you didn’t know you had and you die as a consequence of your treatment (neutropenia, staph infection, heart failure during surgery etc) but left untreated the cancer was killing you in any case.
  4. It detects a cancer or a pre-cancerous condition that you didn’t know you had that would have resolved itself without medical intervention and this results in you being anxious. It may also result in you having a lumpectomy that reveals a benign lump. This will be frightening but will ultimately reassure you that you don’t have cancer (and probably also inspires you to reassess your life and the choices you make).
  5. No cancer is detected, even though you have cancer. In time your cancer will either resolve itself or become apparent. If you have any symptoms you should request other forms of testing and not rely upon a negative mammogram.
  6. No cancer is detected because you do not have cancer.

Here’s the thing. There is absolutely no way of knowing which of these categories you fall into without actually having the mammogram. Take a good look at point number one again and ask yourself, “Am I prepared to take that risk?”

Before you roll that particular dice it would be a good idea to know your odds. I mean, if the risk of getting breast cancer was one in a million you’d be justified in wondering if the discomfort and low radiation dose associated with a mammogram was worth it. But if you’re an Australian woman your odds of developing breast cancer are one in eight.

One in eight.

The risk is similar throughout the developed world. Here’s a link with the current statistics:

Breast cancer statistics

Add to that the clear evidence that early detection improves survival, and helps to minimise the risks and side effects associated with treatment.

Thanks to early detection I had no spread of cancer to my lymph nodes. Once triple negative escapes to the lymphatic system it spreads, typically to bone, lungs or brain. Give me early detection.

Early detection might also mean that you can have a lump excised and keep your breast, rather than having the breast removed. It could mean that you avoid the risks, discomfort and possible side effects of chemotherapy or radiation. It could mean faster and fuller recovery from cancer.

So the next time someone tries to tell you that a mammogram will kill you, you might like to respond with this:

How do you know that?

It’s my favourite question for people quoting an internet article. In fact the research clearly shows that mammograms save lives. You might also like to send them this excellent article about the mammogram controversy:

Mammograms save lives

I know. It would be easier to just smile and nod and walk away, but these people are dangerous. I have met women that refuse to have free testing because of the scare campaigns. I just hope they aren’t one of the one in eight that will develop breast cancer, because, by the time they do it might be too late to save them.

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For Terry

Regular readers will remember that I recently lost my dear friend, Ricki, and wrote about it on this site. I was shocked and honoured when her priest and family referenced my words at her funeral. It was a sad day, but a wonderful celebration of a life well lived. Her husband, Terry, is still struggling without her and after yesterday’s post he wrote to tell me he’s been having a tough time recently. I was going to respond directly but it ended up being a long piece about grief that I thought might be helpful for others going through the same thing. So I’m posting it here:

Dear Terry,
I’d say you were about due for a rough week. I remember once reading a book about grief that described it as a series of stages. Having been through it, I’d say it’s a lot more like a swamp. Sure, there’s denial and anger and bargaining and sorrow and acceptance but they don’t unpack into a row of neat little boxes. Instead we lurch from one relatively stable island to the next, sometimes falling back into the swamp and spending the day waist deep in mud, or feeling like we’re going to drown in it. This is normal.

Moving into sadness might feel like the hardest thing you will ever do but my experience is that tears are the river through the swamp and acknowledging your sadness is the fastest way through it. I know that grief can feel like it is all consuming but somehow we survive it. Even on those days when the swamp pulls us under, we somehow drag ourselves out and keep going. This is a heroes journey and you are up for it.

Opening up to the grief and getting in touch with the present feels like the exact opposite of what most of us want to do. It’s why people use distraction, or avoidance, or numbing themselves with alcohol or drugs. All of these are akin to sitting on an island in the middle of the swamp and refusing to move. There might be times when this is part of your recovery but as a long term strategy it’s self defeating.

Writing about how you are feeling will help. It’s a way of letting your mind know that you are acknowledging all of the emotions that are bubbling up for you. I’d suggest starting a journal and just spending a bit of time each night recording how you felt that day, without judgement. It might not feel like it now, but at some point you will notice that you had a whole day on dry land. Between then and now you will have days of misery. It is what it is. This too shall pass.

The exercises in my book will help you, but think of them as a kind of walking stick to assist you across the swamp rather than a way to airlift out. There are many paths through the swamp and some are more difficult than others, but sooner or later you must cross it. Knowing that there is definitely dry land ahead of you somewhere will help. The swamp is not endless. Just horribly difficult. Get in touch with your own values and what really matters to you. Who do you want to be in this situation? What do you want to stand for?

It’s a cruel time to be made redundant. As if you didn’t have enough to grieve. I can understand why you’re not excited about buying a new car. In the current circumstances it will feel like a chore to even pick it up. This is normal.

When you feel ready, it’s a good idea to find a few group activities that you enjoy. I know the company of strangers possibly feels like the last thing you want right now but that will change. Company is the best antidote to loneliness and all of us need connection to others. Baby steps. Some people find joining a group that specifically deals with grief is helpful and others find it too overwhelming.

Know that your home will transition over time. Right now it is a reminder of Ricki’s absence and a source of pain but as you progress through your grief it will start to become a reminder of all the great times you shared. It’s common to advise people not to sell their home before at least one year has passed. I agree.

I also think getting a referral to a good psychologist is always worth doing when a major life crisis hits. Just having someone to talk to about what you are going through is hugely beneficial. Your GP can refer you for up to 10 visits on Medicare and ten more after that if you still need them (and you will probably still need them).

As a man of faith you may also find support through your church. I know other Christians often say it was their faith that got them through times like this. I do not believe in any god, but I believe in the power of faith and the significant part it plays in the lives of those that have it.

I think when you are feeling most lonely it can help to connect to the common experience of fellow human beings. Everyone alive has either lost a person they loved, or they will at some point in the future. You are surrounded by people that have already been through the swamp and others that are yet to get their feet wet, but who will benefit from your experience. We all die.

You are already a living example of how one human can greatly love another and this has been a significant influence on so many people, including your children. Now you are becoming a living example of how someone survives such a great loss. This is no small thing. If we cannot see examples of how to recover from losing our beloved then why would we ever risk ourselves to that kind of love? If the pain was too much to bear then surely we would hold ourselves apart from love.

I know that you will show all of us that even though the grief is sometimes overwhelming, love makes all grief worth it. The only way to avoid grief is to avoid love, and who would not want the kind of marriage that you and Ricki enjoyed.

My best wishes on your journey across the swamp and know that I am here, out on the edge, to shout out encouragement when the going gets tough. I wish I could wade into the swamp and pull you out but unfortunately grief doesn’t work that way. Each of us must find our own way.

You’ve got this.

Love

Meg
XXX

 

Adventures with Acupuncture and Alcohol

Some time around November my peripheral neuropathy returned with a vengeance. For the uninitiated, this condition is a common side effect of chemotherapy. The variety of chemotherapy they gave me is designed to knocking out all the cells that reproduce quickly. That includes the cells that form hair, fingernails, the lining on your mouth and the surface of your tongue. This is why we go bald and develop ‘metal mouth’, where everything tastes strange. Unfortunately many people also get a kind of dieback in the nerve endings at the extremities of the body.

For me, peripheral neuropathy turned up just before my last chemotherapy session. My final dose was reduced but I still wound up with uncomfortable pain in my hands and feet. It gets worse than this. Some people are crippled by peripheral neuropathy and others find doing even simple tasks with their hands acutely painful.

Nerve pain is unlike any other kind of pain. It can be difficult to describe. Most commonly it’s compared to ‘pins and needles’, or that aching numbness you get if your circulation to your hands is compromised; if you ever tried sitting on your hand as a kid you’ll remember the exquisite numbness as the blood supply returned. Sometimes my hands feel like I’ve just removed them from iced water, and other times they feel hot and itchy. It all went away when they gave me gabapentin following the bilateral mastectomy. It’s a great drug for nerve pain but in my case it also affected my brain in unexpected and unpleasant ways. Gabapentin is also used to treat epilepsy so this was hardly surprising. In my case, I started coldly and calmly contemplating suicide. I wasn’t depressed or unhappy. Taking my own life just started to seem like a logical option. It was a scary time.

Denied the drugs that usually help with the condition I’ve tried various supplements, including fish oil, evening primrose oil, ginkgo and vitamin D. I also practiced daily yoga and stayed away from inflammatory foods, including gluten.  At some point my hands and feet returned to normal. The pain was gone. I should have kept a journal. Perhaps I’d know what to do now that the pain has suddenly, inexplicably returned.

The trouble with nerves is that they grow very slowly. My radiation oncologist told me that things wouldn’t be done for about eight years. This means that establishing a causal link between anything I did or took is problematic. Since November I’ve been trying to diagnose what caused the relapse with no luck. I’ve figured out that avoiding sudden changes in temperature helps, so maybe summer’s air conditioning was a trigger. Who knows. Of course I hit the internet trying to find clues. Acupuncture kept turning up as a possible treatment.

I’ve had acupuncture only once before. When I had fibromyalgia I saw a local doctor who put needles into my pressure points. These are acutely painful spots on your body that occur in a pattern that is typical of this condition. Having needles stuck in them was enough to bring me to tears. I had two sessions before deciding that even if it was helping I would rather have the constant dull ache of fibromyalgia than the intense torture of acupuncture.

Then I had a series of people randomly mention a local acupuncture practitioner, not knowing I was considering treatment. My friend, Maryanne, would say the universe was speaking to me. In any case, I decided to make an appointment.

Tim, the acupuncturist, is a warm, friendly person and easy to like. He asked me a series of questions about my history and symptoms before taking my pulse. Somehow, this pulse taking allowed him to diagnose that my energy levels were low and that I needed to express grief. The skeptic in me observed that these would be fair assumptions to make about anyone that was coming out the other side of a bilateral mastectomy and treatment for cancer. He explained that according to Chinese medical tradition, energy is stored in the kidneys and mine are running on empty. This means there is not enough energy to reach my hands and feet. He also detects ‘lung blockage’ which is how he has diagnosed grief.

I have family members that would roll their eyes and scoff, but if there is one thing I have learnt throughout my treatment it is this: We have no idea what we don’t know. I had the kind of prognosis that left doctors convinced I would no longer be alive, and yet here I am. I have no doubt that my massage therapist has played a large part in my survival and she ‘talks to spirit’ and allows my body to tell her what it needs. Who am I to argue?

So I climb onto the table and let a stranger stick pins in me.

The first few are surprisingly painless. No really. Completely painless. I can feel a sensation that is similar to someone resting the head of a pin against my skin, but no more than that. The next few are more noticeable but still not painful. Tim asks how they feel. The only word I can find is ‘weird’. Tim tells me that’s the word most people use. It’s a very odd sensation. I get a sudden pressure in my head which Tim relieves with a bit of massage. Once there are a few pins in my feet and legs and a few more in my hands, Tim leaves me for ten minutes or so to allow the acupuncture to do whatever it does. I am very conscious of holding myself still because the idea of bending or breaking a needle is horrifying. I breathe and practice a bit of light meditation. It helps.

Tim returns, removes the pins and processes my health fund rebate as I pay. Very handy. I make an appointment to see him the following week.

In the week that follows I’m conscious of the risk of observation bias. It’s possible that any shift in the peripheral neuropathy will be attributed to the acupuncture but with a sample size of one and no control, how can I be sure. My hands don’t feel as tingly, but they still ache. I find I have more energy and acknowledge that this could be coincidental. I watch a movie that a friend recommends called ‘I miss you already’, which is all about a woman dying of triple negative breast cancer (okay, maybe the universe IS talking to me) and I have a really good cry. I realise that when you go through treatment it’s enough to just get through each day. I am also aware that my policing background taught me the unhealthy habit of parking my emotions rather than dealing with them in real time. The movie helps me to grieve. I feel much better the following day and every day since.

My second visit is much the same as my first. Tim takes my pulse again and seems disappointed that my kidney tanks remain empty. I tell him that thanks to my improved energy I managed to spend a whole day out in the garden, hauling and placing mulch. He politely tells me about patients he has treated with chronic fatigue that undermine their own treatment by rushing to do all the things they haven’t been able to manage. I get the message. Rest, rest and more rest until I see him next time.

There are more pins on the second visit, including two at my neck that are painful. Tim apologises and explains that instead of refilling my kidneys, all my energy is rushing to my head and this is why I have experienced pressure during both treatments. I notice that the pressure in my head has subsided since the pins went into my neck. Perhaps it’s like that old joke about stomping on someone’s toe so they don’t notice their headache.

Following the second session I have a massive sugar craving and I feel extremely weary. I eat chocolate and go to bed. I’ve booked another session. I’ll let you know how it goes.

I’m not sure how much of this treatment is about the needles and how much of it is about the talking. I’ve been encouraged to grieve and rest and both of those are helping. I’m also paying close attention to my symptoms to see if I can identify any contributing factors. Alcohol is the only clear villain. I knew that.

I’ve written before about my ongoing relationship with alcohol. It reminds me of low level domestic violence. I enjoy the first drink, and the second. If it was possible to just have those two drinks once or twice a week then I would be complying with the new standards for anyone that has had breast cancer. The trouble is that alcohol lowers impulse control so any time I have the first two I usually find myself continuing to drink throughout the evening.

The honest recommendation is that we not drink at all, because alcohol is a known carcinogen, and if we do drink to limit it to half a bottle of wine a week (or the equivalent). This is a compromise. My oncologist tells me there was a lot of debate about just issuing a statement against all alcohol but they are realistic and believe that setting some kind of limit means we’ll all think more carefully about our drinking. This is a bit like telling a smoker to cut down.

I am very familiar with this dance. I tell myself that I will limit my drinking to X amount or to X days or X circumstances only to break my own commitment, feel remorse and recommit. I used to do exactly the same thing with cigarettes. The time is coming when I will give up alcohol (even typing that was hard and I wanted to type ‘consider giving up alcohol’ but caught myself in my own delusion). Just like cigarettes, I anticipate a few false starts before I move towards a healthier, happier life, free from post-drinking remorse. Just to be clear here, I’m not talking about binge drinking or hangovers or behaving badly. My drinking behaviour is what the vast majority of my friends would consider normal. That in itself is a worry. We used to smoke at our desks at work too, and while we were driving around in police cars. Times and standards change.

The trick for me with cigarettes was that I became sick of giving up. I used to joke that eventually I gave up giving up and that might be just the trick for alcohol. Stop. Enjoy the alignment of my behaviour with my values. Celebrate that unlike cigarettes, giving up alcohol will actually help me to stay a healthy weight. Find friends and activities that aren’t associated with alcohol and, at least for a time, avoid friends and activities that are. Except my husband drinks wine! I wonder if it’s reasonable to ask him not to drink at home for a while, just until I find my feet. Is that any different to asking him not to bring chocolate home when I’m trying to lose weight? I guess it never hurts to ask.

Oh wait. He turns 60 next month! How could anyone celebrate a birthday without alcohol? And that right there is the problem. It’s so much a part of our culture that deciding not to do it is seen as just a bit odd. I’ll just tell everyone I’m the designated driver. That should work.

I notice that even as I write my brain throws up objections. My daughter gets married this year. Won’t I want to toast the bride and groom? How about afternoon wine on the verandah with my husband? Do a really want to give up what has become a ritual that connects us after a busy day?

I have a cousin who gave up drinking some years ago. She tells me that it’s a grieving process. Perhaps that’s another layer to all of the various layers of my grief. My inner three year old wants to throw a tantrum and insist that I ‘deserve’ alcohol.

Maybe I need to give her a big hug and explain that I deserve good health much more.

 

Goodbye my friend

My friend, Ricki Hayes, had lost her long and painful battle with triple negative breast cancer. I will miss her.

Death was expected. I received a message from her beloved and endlessly supportive husband of 37 years, Terry, on the 28th of December. She was in pain which the doctors were managing “as best they can” and it seemed she only had a few more days. My sadness at her passing is tempered with genuine relief that she is no longer in pain. I nursed my father during his lost battle with cancer and I can appreciate how distressing this last ten days must have been for Ricki and her family.

I met Ricki through the Breast Cancer Network Australia (BCNA) site when I started sharing some of my blog posts with other women dealing with breast cancer. Rick was a long term survivor and still spent time on the site offering support and encouragement to other women. She started following my blog and was often the only person to comment on something I had written. On days when I contemplated abandoning it all, it was Ricki that encouraged me to keep going, to keep writing. “You put into words what so many of us are struggling to say.”

It was Ricki that first suggested I should write a book about dealing with the fear of recurrence that plaques people living with cancer, and people dealing with life after cancer. I am certain I would never have written it without her encouragement. She was the first person to receive a final copy of the book.

Rick described herself to me as “ordinary”. She was a devoted mother and grandmother, a loving wife and like so many women, she wore many other hats. Her career as a teacher earned her a legion of loving ex-students and her involvement in her church gave her a community of faithful friends.

Her commitment to helping other women with cancer went beyond the online support she so frequently offered through BCNA. She volunteered to allow researchers to test new drugs and methods on her. “If being their guinea pig can save someone else then that’s enough for me,” she told me. She was also an active online advocate for a host of important issues, including marriage equity, access to medical cannabis and the PBS listing of potentially life saving cancer drugs, including Keytruda, that are currently too expensive for most people. She talked openly about what life with metastatic cancer was like, and supported so many other women going through a parallel experience.

When Ricki knew she had reached the end of her treatment options and that a slow decline into death had become inevitable, she sent me a short message to let me know and I wrote back expressing my sympathy and support. I am still struck by her reply. Here it is:

Thanks for your calming words Meg. As I was showering …(.best thinking place without distractions and love the sound of running water!!!) how liberating I felt knowing I could spend time and energy on ‘living’ rather than always feeling as if I was fighting an enermy/ pushing through nausea etc 😊 I know there will be days that are tough….thats part of normal life anyway, but the feeling of liberation the I have today far outweighs anything else. I have been and are blessed in SO many ways, how dare I complain when there is so much suffering by those who are displaced by war, greed and the push for power.

I’ve had the excitement of adventures at home & overseas; the privilege of study and encouraging little minds to delve into the future; to feel suffering so I can better understand and walk with others who are there; but mostly I have known so much joy and that is what I wish to focus on. My family, my friends near and far, my environment … wherever I find myself each day….the other things I cant control so I’ll leave them to those who specialise in them!

Real freedom comes when we truly realise and accept the inevitability of life. Then we can begin to live!

Thank you for your support encouragement, knowledge, friendship and love.

I would not have been at all surprised or critical if Ricki had been despondent or angry at the news that there was nothing other than palliative care available to her, but here she was rejoicing. Life was wonderful. She was going to keep living every second of it, right up until the point when she couldn’t. Her compassion for others and her love for family and friends was always at the heart of who Ricki was, and that’s how I’ll remember her.

Real freedom comes when we truly realise and accept the inevitability of life. Then we can begin to live. Yes. YES. We are all dying. When we come to understand that, all the way down to our temporary bones, something wonderful happens.

In early November I headed down to Sydney for what I knew would probably be my last visit with Ricki. She had sent me messages about the pain she was experiencing and the endless rounds of radiation they were giving her in an attempt to reduce some of the tumours. I expected to see a frail shadow of my friend. Instead I was met with laughter and jokes about dying. Surrounded by flowers, Ricki told me that her dearest wish was to have one last Christmas with her family. Terry tells me they spent it going through photos and enjoying happy memories together. I’m so glad she got her wish. She went downhill quickly after Christmas. I suspect she had been hanging on by sheer force of will but Ricki would no doubt want me to credit God.

Making friends with other people dealing with cancer is fraught. On the one hand, you have so much in common, and on the other there is a reasonable caution about forming close bonds with someone that clearly has a life threatening illness. Will we come to care about each other only to grieve? I would not have missed the opportunity to become Ricki’s friend. We have been through some rough times together and sometimes the only person that can really understand the internal landscape of cancer treatment is someone that has travelled it. The black humour is too much for the uninitiated and our desire to spare our families our darkest thoughts makes these kinds of friendships very special. At one point it looked like I might die before Ricki. Her friendship never wavered.

This is real friendship. Holding tight to each other when you know that death might be just around the corner. Sharing messages of support like notes passed under a desk in a classroom when you know that those messages might be uncomfortable or confronting for others. Fiercely hoping, sometimes against the odds, that survival is possible and ultimately, accepting death with the joyful grace that Ricki has taught me. I will live a better life for knowing her. I will die a better death.

Farewell my dear friend. My heart goes out to your precious family, particularly Kathryn who is so like my Zoe. You will live on in their hearts and in mine.

I wanted to say you were anything but ordinary. I don’t want to contradict you. Instead I will say this; you demonstrated that an ordinary life can be a very extraordinary thing. All my love and gentle hugs.

 

Foobs

On the 8th of August 2013 I had both of my breasts surgically removed. My ‘breast conserving’ treatment for triple negative breast cancer had not been successful and pathology on the most recently removed slice showed active invasive cancer. For various reasons (I’ve detailed these previously for anyone who is interested) I chose not to have any kind of reconstruction. I also chose to to worry about wearing any kind of prosthetic device to give the appearance of breasts.

Fake boobs (aka ‘foobs’) were something I was always prepared to consider, but initially my huge wounds from my F cup breasts meant I was much more comfortable without a bra and by the time I healed I had noticed something very surprising: Most people didn’t notice I’d had my breasts removed! For those that don’t understand sizing, and F cup is almost a kilogram of breast tissue. Think grapefruit sized. Big grapefruit sized. It still happens occasionally; I run into someone I haven’t seen since before the surgery and when I tell them they suddenly look at my chest and gasp. It turns out, we mostly look at people’s faces and not their chests.

I suppose my years of yoga played a part in my decision. Thanks to strong chest muscles I didn’t have the concave appearance that can be an issue for many women post-mastectomy. I also spent some time choosing clothing that suited my new look. After years of wearing a bra I rejoiced in the comfort and freedom of not needing one. I gathered an impressive collection of scarves and loose structured jackets. I figured out that handkerchief hemlines and low-cut necklines needed to go, but slim line skirts and pants, shoulder detail and cowl necks were suddenly flattering. I was happily ‘flat and fabulous’.

It came as a surprise to friends when I decided to try foobs. My first attempts involved the soft forms and bra I was given post surgery. These rode up and looked like I’d borrowed the breasts of a teenager. I also found myself adjusting them and worrying about them falling out at inopportune moments. Boob soup anyone? My decision to try them at all was prompted by my experience shopping for formal wear. My daughter is getting married next year and as mother-of-the-bride I’m going to need to get into some kind of glorious frock. The formal wear choices for flat-chested women are not impressive. A flattering chiffon pants suit was deemed ‘too casual’ by my daughter and the beaded silver dress I already own and love looked strange. What you notice most in fitted clothes when you don’t have boobs is your tummy!

I was also aware that while people look at your face in real life, photos are a different matter. I decided to get professionally fitted for prosthetics. I didn’t book anything or make any plans, other than thinking I would get around to it before the wedding in June 2018.

Recently I had my final visit with my oncologist. That means I’m four and a half years since diagnosis (woohoo!) and I only have one visit left with my surgeon before I am officially at the end of treatment. My oncologist still looks at me with disbelief, wondering how I managed to survive what I now know was a likely death sentence. She smiles and shakes her head and tells me to just keep doing whatever I have been doing. I give her a copy of my book and she hugs me.

After this appointment I find myself in the city, feeling like I should do something to mark this milestone, and it occurs to me that I am close to Leila O’Toole, the specialist supplier and fitter of breast forms and post-mastectomy lingerie. I’d read great reviews about them following surgery. I look them up on my phone and nervously give them a call, half expecting to be told that I need to make an appointment well in advance. A very pleasant woman on the phone tells me to come right over.

I negotiate the very slow and crowded lift to arrive at their suite of rooms on level 8 of the Dymocks building in Sydney. There are four or five women of various ages, including one gorgeous young woman with bright purple hair. Pauline is closer to my age and shows me into a fitting room. She needs to look at my chest to know how to fit me, and runs a tape measure around me. We discuss size and both agree that I do not want an F cup. The real ones were heavy and sometimes cumbersome. Something smaller that suits my body shape please.

The first bra and prosthetics look fine to me. Okay, it looks like I’m wearing fake boobs but I expected that. It’s an odd feeling to be back in a bra after all these years. Pauline has what is obviously her standard spiel about how wearing foobs (she calls them ‘breast forms’) will help my balance and posture, and how most clothing looks better with them before adding, “Well let’s be honest, all clothing.” When I tell her it’s been over three years since my surgery she’s shocked. Somehow I’ve managed to dress myself and not to topple over without them! I know she means well and I’m sure my circumstances are unusual. I’m guessing they usually see people soon after surgery or not at all.

Pauline recommends I try the next size up. Visually there doesn’t seem to be a lot of difference but the minute I put these on I can see the improvement. A good prosthetic should sit naturally against the chest. If I put my hand on my collarbone and slide it downwards there’s a very natural slope from my chest muscle to the prosthetic. I put a cotton singlet on and I am startled by how real these look. It is clearly worth being professionally fitted.

The breast forms are silicone with a microfibre backing. They are designed to also be used by women that have only had one breast removed which means they weigh what breasts would weigh. The feel a bit like memory foam and are pleasant to touch. Pauline tells me that the forms will also protect my chest and I appreciate this. It can be risky to hug people, particularly if I’m wearing chunky jewellery, and foobs will give me some protective padding.

The bras are designed with nice wide sections on the straps so they don’t dig into the shoulders (why couldn’t I get bras like this when I had breasts?) and have a pocket sewn into them so the foob doesn’t fall out. Once they are in the bra, you can move them about a bit until you’re happy with how they sit, just like you would your own breasts.

I leave with two breast forms and two bras. The first is a practical, cream coloured bra that will be smooth under t-shirts and the second is black and lacy. Pauline asks if I’d like to leave the black one on. I decide to surprise my husband by wearing it home.

I’ve now taken the foobs out a few times. I’ve noticed that once they have been on for a few hours my body strangely registers them as part of me. I suppose after all those years of having breasts this in not surprising. Of course they are numb, but then surgically reconstructed breasts are numb too. The other thing I’ve noticed is that people still don’t notice. I had a get together with some brilliant women recently and towards the end of the day I asked what they thought of my prosthetics. Once I drew attention to them there were lots of compliments along with requests to touch them (but not in a creepy way!). There was general agreement that they look very natural. There was also unanimous agreement that, although we’d been together for several hours, nobody had noticed them until I pointed them out. This never ceases to surprise me. One woman commented, “I knew something was different but I thought maybe you’d had your hair cut.”

Wearing foobs comes with all the inconvenience of wearing a bra. In hot weather they are as uncomfortable as the real thing. I’m glad I can take them off. I’m also happy to have the option of not wearing them when I’m doing yoga or working in the garden. The real ones were a bit of a nuisance in both circumstances.

Having seen the difference a small change in size can make to the appearance of foobs, I now marvel at the skill of surgeons that provide alternatives from body tissue or silicone implants. I can understand why many women have a number of revisions (additional surgery) when a small difference in size can have a significant impact on appearance. I remain very happy with my personal decision not to put my body through that. I respect any woman’s decision to go down that path, but having perfectly sized foobs that I can take off at the end of the night is definitely a better option for me. So is just being happy in my own skin and not wearing a bra.

I think of my foobs as being like any other fashion accessory that I use when I dress up. I won’t be wearing them all the time, any more than I would wear high heels or dangly ear-rings, but it’s nice to have them as part of an outfit when I choose. I can see what Pauline meant about some outfits just looking better with a bit of a curve at the chest. I don’t agree that this is true of all outfits. There are plenty of naturally small-breasted women on the planet and lots of beautiful clothing designed for them.

If you’re considering foobs then I would recommend a professional fitting. Some areas have a mobile service that will come to your home. The full cost of the breast forms was refunded by Medicare (the government health fund in Australia) and my private health insurance (Medibank Private) covered $70 towards the cost of each bra. The government will cover me for a new pair of breast forms every two years. I might try some of the light weight forms for swimwear next time. Leila O’Toole also have a wonderful selection of swimwear and I admit it has been particularly difficult to find nice swimmers. I wonder if mastectomy swimwear is covered by my health insurer.

Caring for breast forms is simple. “Wash them like you would your own skin,” advises Pauline. “We like to keep it simple.” The front of the form is silicone and will towel dry. The microfibre backing takes a bit longer. If you’re any where near Sydney and would like to meet a great team of people with excellent product range and knowledge then I’d happily recommend Leila O’Toole. Here’s a link to their website. Once you know your size you can also mail order from them.

Leila O’Toole

Are you wondering how my husband reacted when I arrived home? He noticed I was carrying a very large unmarked shopping bag (foobs each come in a large storage box to hold their shape) and asked what I’d bought. “It’s a surprise,” I told him, “I’ll show you when we get home.” Yep, he didn’t notice that I was wearing foobs. Not when he hugged me, not when I put the seat belt on and not until I actually took my shirt off when we got home. When I asked him why he thought he didn’t even see them, he said this: “I don’t see you as parts. I love all of you. I just see all of you. You’re always beautiful to me.” He’s probably a huge part of why my recovery did not require foobs.

Second Mona Lisa Touch Treatment

Yesterday was my second round of laser treatment for vaginal atrophy. The procedure was much like the first but I was a lot more relaxed now that I’d been through the whole routine before.

The doctor asked about my response to the first treatment. There’s no doubt that I’ve had good results. I’m much less dry and a lot more comfortable. I’m having what I think of as the toothache response, where you don’t appreciate how much something was bothering you until you find relief.

The observable differences after the first treatment included an end to leaking following urination. For me, this was enough to justify the cost, but the benefits included better vaginal lubrication and relief from the residual tension I hadn’t noticed my body had been holding in response to feeling like I had sand caught in my swimmers.

I was surprised to notice that having better vaginal lubrication also improved my libido. I suspect that my body, recognising that intercourse was likely to be painful, had shut down whatever part of the system makes me interested in sex. I also made the observation that my mood generally was much better. I had underestimated the impact of a poorly functioning vagina on my emotional state.

For the second treatment the doctor spent a bit more time on the entrance to my vagina and to the exterior labia. This is more uncomfortable than the internal treatment due to the increased nerve endings in this part of the body. I commented that the pain level was similar to having hair removed using wax strips and the doctor replied that this was a common observation. It stings, but not for long.

Post treatment I was advised to use sorbolene externally to reduce stinging during urination. I was very glad that I’d purchased some on the way home because ‘stinging’ turned out to be a painful burning sensation. The sorbolene relieved it instantly. If you’re having this treatment then it would be worth buying some in advance. I’d recommend finding plain sorbolene in a pump pack and avoiding anything with perfume or additives as this could irritate sensitive skin. A pump pack makes it easy to apply and you don’t have to worry about getting the lid back on.

My other tip would be to dress warmly on the top half of your body for your treatment sessions. For reasons I don’t understand, most gynaecologists wear suits and adjust the temperature control accordingly. This time around I was much more comfortable in a soft jumper, even though it was a fairly warm day.

My second treatment cost $350 with a $90 rebate, so I was $260 out of pocket. Given the improvement I’ve observed I consider it money well spent. I have one more treatment in a month’s time and then I will only need occasional top up treatments. There is no way of knowing how often I’ll require these and the doctor tells me that it varies from annually to every three months. I’m already certain that no matter how often I need them, it’s worth it.

I am also grateful to be in a position where we only need to cut back a bit of spending in a few places for this to be affordable. I am aware that for many, many women it will just be far too much money, particularly if the finances have already taken a huge hit following cancer treatment.

I’ve been spending the last month contemplating the fact that men can obtain viagra at a government subsidised price (at least in Australia, where I live) because there is recognition that erectile dysfunction is not just about the ability to maintain an erection. It’s also something that has significant mental health repercussions. How is vaginal atrophy any different?

I appreciate that there’s an argument for making treatment available to breast cancer survivors based on the same arguments used to justify government subsidised reconstruction, but I don’t think the subsidy should be restricted to us. Anyone having chemotherapy is at risk of early menopause and vaginal atrophy, not just those of us receiving treatment for breast cancer.

It’s also worth considering that all post menopausal women are at risk of this condition, regardless of their cancer status. As the doctor observed on my first visit, it’s only cultural attitudes that prevent us from treating this as a serious health issue. Why is that, and how can we shift those attitudes? Why is it important for men to maintain sexual function, but not women?

The doctor also observed that sexual function is not the most important benefit of this treatment, which is saying something, considering how significant this benefit is for many women. Vaginal atrophy also predisposes women to a much higher rate of urinary tract infections, prolapse, urinary incontinence and just day-to-day discomfort.

I was pleased to see a current university study into the Mona Lisa Touch therapy. I’m hopeful that the results will validate what so many patients already know. This is a non pharmaceutical treatment with significant benefits and few side effects. It should be better known and more widely available at an affordable cost.

So far, I’m impressed. I’ll report back next month after my final treatment.

 

 

First Mona Lisa Touch Treatment

Today was the big day. I was fortunate to be able to book in early for my first Mona Lisa Touch session, due to a cancellation. I’ve spent some of the last week reviewing comments on other sites about it and by 4.00pm today I was feeling mildly excited about the whole thing. The main objection seems to be cost, and the need for ongoing treatments. Results vary from good to excellent. Some women report pain, and some don’t.
You know that thing that happens where you finally admit you have a problem and suddenly you start to notice it much more than you used to? I’ve had a week like that. I suppose the long, slow decline into significant vaginal atrophy has beens so gradual that I have just accommodated the discomfort. All I’ve been able to focus on this week has been the sorry state of things, and the possibility of recovery. Today couldn’t come soon enough.

I was shown into the treatment room and asked by the assistant to strip off everything below the waist. “You can keep you knickers on until the doctor arrives if you like.” I didn’t see the point but appreciated the courtesy. I sat in the treatment chair and spread a cloth across my lap. A few minutes later the doctor arrived. He took some individually packaged items out of a cupboard and put his disposable gloves on, before explaining to me that the first treatment was usually the one people found a bit uncomfortable, mostly because of the unfamiliarity of the process.

The doctor attached a metal rod about the size of a tube of toothpaste to the end of a cord attached to a mechanical arm. He held his hand behind the tip of the rod so that I could see the red laser against his glove. This was what would create tiny blasts against the walls of my vagina, causing the skin to rejuvenate. It looked a bit like the laser toys you use to amuse cats, and I avoided making pussy jokes. Next, the doctor explained that the device would vibrate and that the procedure sometimes resulted in some smoke and a burning smell so he’ll be using a small vacuum. The humour potential of this procedure is apparently endless. Determined to have a smoking hot vagina, I scoot down and put my legs in the stirrups.

I’ve watched the video of this procedure before coming in today and I highly recommend it. Knowing what is about to happen certainly reduces any anxiety. You can view it on Dr Metawa’s site here:
https://drmetawa.com.au/web/index.php/gynaecology/vaginal-atrophy.html

There’s some pressure as the rod is inserted, but no more that you would feel with a speculum during a pap smear. Probably less. I’m asked to take a deep breath and to let it out slowly. Once the rod is inserted, the doctor asks me if I think there’s any more room and I suggest he can probably go a bit deeper. I am once again impressed by his determination to minimise any discomfort to me.

The procedure starts and there’s some clunking noises from the machinery, a mild vibration from the rod and the faint odour of burning skin. It doesn’t feel unpleasant and I am not in any pain. I did take two Pandadol about an hour before the procedure, just as I would with leg waxing or any other minimally painful procedure. I know that the laser is making tiny incisions into the walls of my vagina but I can barely feel it.

After about five minutes the doctor tells me that we are half way, and that I may find the sensations more intense as the skin towards the opening of the vagina is more sensitive. I start to feel some stinging, but it’s mild and certainly less that the pain of waxing or laser hair removal. As predicted, the intensity increases at the opening of my vagina and there are a few hits to the vulva that sting. If you have every pulled out a stray pubic hair with tweezers, that’s close. A bit of an ‘ouch’ but nothing too serious. I’m smiling and chatting. It’s all good.

The whole procedure is over and done in about ten minutes. There is no pain or discomfort once it’s finished. I’m told not to put anything in my vagina for five days and to expect a kind of watery discharge which may show signs of blood for about three days. All this is normal.

I was told the procedure would cost $200 with a $90 rebate but there’s also a $150 consultation fee, so $350 all up with $90 back on Medicare means I’ve paid $260 for today. I have two more treatments to go, each a month apart. I think it’s money well spent.

To put the cost into perspective, I know people that spend $300 a month at the hairdresser, or the beautician or the manicurists. Personally, I don’t balk at spending at least that amount on regular massages and yoga classes. It’s all about priorities. I’m hoping to reclaim comfortable intercourse with this procedure (and it would be worth it for that alone). I’m also expecting it to restore my ability to urinate without it going over my thighs and to be able to stop urinating without it continuing to leak. As a side benefit, I will be able to use toilet paper again without leaving a trail of confetti behind.

As I drive away from the doctor’s surgery I have a pleasantly warm sensation in my vagina and vulva. It feels a lot like the last time I had great sex. There is no pain two hours later as I write this, but I’m feeling hopeful and happy. I heard from one woman who said she needed to sit on ice packs for three hours after her treatment. I don’t know if this is something to do with her anatomy or something to do with the skill of the operator. I simply acknowledge that my absence of pain might not be the case for everyone.

It’s too soon to tell how much impact my first treatment has had, but already I feel a lot more comfortable. Things feel normal again, rather than dry and stretched. This is a good sign. There’s a mild stinging when I urinate but it’s brief, and there’s enough blood to wear a panty liner.

I’ll update in a couple of weeks when the results should be evident. I’m feeling optimistic.

In other news, my yoga teacher has asked me to do a trauma workshop with her and to lead some of the exercises from my book. I’m honoured and excited. There are also two psychologists and a doctor that have told me they plan on recommending it to their patients and a local oncology massage practice have a sample copy on display. I had great feedback from a lovely woman this week. Here’s the link again for anyone who’s interested:

https://www.amazon.com/dp/1521249377?ref_=pe_870760_150889320