One Year Scans Are Good!

Great news. I had my one year scans last Friday and there is no sign of cancer.

Whew!

I’ve been looking and feeling great but my history tells me this is no guarantee of anything. The last time I looked and felt great we walked into the surgeon’s office expecting to be told that everything was okay and instead we got the news that I needed a mastectomy.

Appearances can be deceiving.

So I am greatly relieved to have the news that my internal health is aligned with my external appearance.

My surgeon decided that the benign lump I discovered several weeks back should be removed. “With your pathology and history there’s no such thing as a good lump.” Fair enough. So yesterday I attended her surgery and their Fellow (someone very close to being a surgeon who serves a kind of apprenticeship for a year) cut the lump out of my chest and stitched it up while we chatted about vaccines, yoga and permaculture.

The stitching was the worst part.

I had expected it to only involve a couple of stitches and a bandaid. Instead, he decided to use some heavier sutures to make sure it all stays stitched because my tissue was irradiated as part of my treatment and this makes the tissue fragile. Then there was some top stitching with a finer thread. All while fully conscious.

I’m surprised I didn’t go into shock.

I think it’s just one of the many changes that’s happened as a consequence of my treatment. I’m now a lot more at ease with medical procedures, blood and having bits of my body removed. Still, it was definitely a surreal experience.

When he finished he explained that he’d made the incision a bit larger than it needed to be so he could join it on to the smaller of my scars ‘for a better cosmetic result’. Seriously? Have you seen the pictures of my chest? I’m beyond worrying about how pretty it all looks. I wish he’d listened to me when I said I wanted the least amount of surgery and that I didn’t particularly care if I had a third scar.

Apart from really not caring so much about appearance, the scar he’s joined it to has already been opened up twice and the last time I had problems getting it to heal again. I’d really prefer he’d left it alone. I suppose it’s possible that ‘appearance’ includes avoiding puckering, in which case I’m grateful. I don’t wear a lot of skin tight clothes (except for yoga) but not having odd bumps on my chest would be my preference.

I understand that surgeons are trained to give the best appearance possible, and I applaud this shift. I used to be that a mastectomy involved heavy scaring and extensive skin grafts. Nobody worried too much about what we’d look like afterwards.

I also know they often deal with patients that say they don’t care about something only to discover post surgically that they really do.

It’s all about communication and taking a bit of extra time.

The lump will go off to pathology, just to conduct a routine biopsy, but even looking at it he was happy that it’s extremely unlikely to be cancer.

One year down and four to go.

One Year Post Mastectomy

Fanfare please!

It’s been one year since my bilateral mastectomy.

It seems like an appropriate time to post an update on my recovery and to reflect on what’s helped, what’s hindered and what needs to happen during the next year.

There will be photos, so if you’re squeamish about scars then best skip this one.

The short version; I feel great. Lately I’ve actually been feeling well, really well, for the first time since my surgery. I’m amazed by the body’s ability to heal and surprised at how long it’s taking.

If you’d asked me just after surgery how long I thought my recovery would take I would have guessed three months or so. Even one whole year later there’s still a little way to go before my body is done.

This is important.

There have been times during the last year when I’ve thought, ‘Is this as good as it gets?’ It seems to me that healing will happen for a while and then there will be a plateau where nothing much changes. I’ve come to think of these plateaus as the body taking a rest from the hard work of healing.

The whole experience has been an opportunity for me to take a hard look at my life and my habits. I suspect there are people whose recovery is passive. They wait and hope, trusting that whatever medical treatment they received will do all the work for them.

It’s been my long experience that recovery from anything needs to be active. We can support or hinder our recovery with some very simple choices, like what we put in our bodies, how much sleep we get and how much stress we’re prepared to tolerate.

I’ve been actively participating in my recovery.

I’ve cared for my skin, particularly the site of my surgery, by using a body oil after my shower. I’ve also taken care of lymphatic drainage from my left side by using gentle massage throughout the day. This area has had a lot of damage following three surgeries and radiation. While I haven’t had any signs of lymphodema, I see regular lymph drainage as an important preventative measure. I’ll be doing this for the rest of my life.

I’ve lost weight using The Fast Diet. My doctor recommended this because there are statistics showing that excess weight can contribute to breast cancer risk. Fasting also triggers autophagy, the body’s natural mechanism for cleaning up dead and damaged cells. Anyone whose experienced triple negative breast cancer knows that we don’t have any of the new ‘wonder drugs’ available to us. Fasting seems like the best thing I can do to prevent recurrence. I’ll be doing this for the rest of my life.

Yoga has probably made the single greatest contribution to my recovery. I do at least one class a week (two when my husband joins me) and I practice at home every day. When I wake up in the morning I get dressed in my yoga gear. I have coffee and check my messages and daily schedule and then it’s straight into yoga before breakfast. I’m able to do things with my body that I couldn’t do before I was diagnosed. Of course the point of yoga is not to twist your body into increasingly difficult poses. Yoga is about integrating the mind, the body, the spirit and the breath. Yoga has helped me to love my post-cancer body and to feel strong and flexible, mentally and physically. I’ll be doing this for the rest of my life.

Massage has also been a big part of my recovery. I found a local massage therapist with specialist oncology training. As well as regularly helping me to move back into my own body she’s gently massaged my surgery site and this has greatly assisted in settling all of the nerve pain and helping me to regain sensation in that part of my body. It’s also deeply relaxing.

I was eating fairly well before diagnosis and treatment has been an opportunity to review what goes on my plate. We’re shifting towards more and more vegetarian meals. I rarely eat gluten any more and I feel better for it. I’m naturally eating less food thanks to The Fast Diet and the impact on my appetite. We’ve adopted the SLOW principles as much as possible; Seasonal, Local, Organic, Wholefoods.

I’m eating much less sugar and finding that I can’t eat anything really sweet anymore. I suspect this is because fasting has killed off the gut bacteria that trick my brain into wanting more sugar. The recent discoveries in relation to the gut biome continue to fascinate me. I’m sure we’re only just beginning to understand how important this work is for our future health. It’s certainly a strong motivator to avoid processed foods with all their additives and preservatives that prevent bacterial growth.

Thanks to a couple of visits with a psychologist with ACT (Acceptance Commitment Therapy) training and Russ Harris’s books on the subject, I’m now very clear about what’s important to me, what I value and what I want my life to stand for. To celebrate my one year anniversary I’ve enrolled in a permaculture course. There are those that would argue I don’t need this training because I’ve been practicing permaculture all of my adult life.

My friend Cecilia challenged me to ‘become a world famous permaculture teacher’ which is what motivated me to finally enrol. She’s clever. I don’t really need to become famous (nor do I want to) but I really do want to teach the skills I’ve been practicing for so many years. Permaculture is simply the best way to be human and the map for the survival of our species.

One of my favourite quotes has always been ‘Be the change you want in the world’. When I was a teenager I looked at a photograph of the planet from space showing all of the lights of civilisation and spontaneously thought ‘human cancer’. I was distressed by the damage we were doing to the planet and a sense of helplessness. For me, permaculture holds the key to healing humanity’s cancerous impact on the planet. It’s probably going to keep me well too.

So here’s my latest photos.

As you can see, I’ve come a long way since surgery.

P1070559 P1070558 P1070557 P1070556

 

 

My chest has gone from being almost completely numb to almost completely recovering sensation. I still have numbness along the scar lines and there’s an area of nerve damage above my original surgery scar (that’s the little arc high on my left side). Nerve damage feels like electricity under the skin. It’s continued to improve with massage and I’m hopeful that it will eventually disappear.

My chest still feels a little tight, as if I’ve got a large sticking plaster on it, but this has improved and I believe it will also vanish in time. For most of last year I felt like I was wearing an undersized bra (how ironic) and the tightness extended all the way across my back. That’s resolved now and I only have my chest to deal with. Yoga and massage both help with this.

I still need to remember to keep my shoulders back and to hold my body up. My doctor tells me it’s common for mastectomy patients to develop a stooped back and rounded shoulders. I suspect this is a combination of relieving that sensation of tightness and, perhaps, embarrassment at having no breasts. I regularly roll my shoulders up and back, particularly when I’m at the computer.

My neck has taken a while to adjust to the absence of two F cup breasts. Removing close to two kilos of weight left my neck and shoulders in a state of shock and once again, yoga and massage have helped. A friend showed me this neat trick; point your index finger at the sky; now bring your finger so it touches your chin and the tip of your nose; push back until you feel your neck is back in alignment. You can also push your head back firmly into a pillow when you’re in bed, or the head rest when you’re in a car. This simple exercise has had more impact on my neck pain than anything else.

As for the other side effects from treatment, I’ve also seen big improvement. I rarely experience any peripheral neuropathy in my feet. I still wake with sore hands but they warm up quickly. I need to be careful with any activity where I hold my hand in the same position for any length of time, such as drawing or sewing. My hands tends to cramp up and become painful. I haven’t given up on my body’s ability to regrow nerves. While one doctor told me I’d probably be stuck with whatever I had at twelve months post chemo, another said it can take six years for nerves to regrow. I’ve already had improvement since my twelve month mark so I’m going with option B.

I have a mild hum in my ears. This is probably also chemo related nerve damage but it could just be age. My Mum has age related hearing loss. It’s important to remember that not everything going on with our bodies is related to treatment. I don’t have that awful metallic taste in my mouth any more and I think this is also a form of peripheral neuropathy. Food tastes wonderful again, particularly straight after fasting.

I wonder to what extent the fasting has promoted healing. The science indicates that it should make a difference. In early days, I certainly noticed more rapid healing following a fast. I’ve observed that if I have any kind of skin blemish it’s usually completely healed after fast day.

As you can see from the photos, the radiation damage to my skin has greatly improved. As well as the circulatory benefits of massage, I think the regular application of rose hip oil has made a huge difference.

As you’ve probably already guessed, my mental state is great. People recovering from mastectomy are, not surprisingly, at high risk of depression. I’m very grateful that the care I’ve received and the work that I’ve done have helped me to avoid that particular complication. In many ways, depression is a worse disease than cancer and certainly at least as deadly. I think avoiding depression has involved a combination of things but particularly the information about ACT, practicing ACT and the benefits of yoga.

The most significant contribution to my state of mind has been the love and support I’ve received from so many people. Special mention must go to my beautiful husband who has continued to love and cherish me through all of this. I’m still beautiful to him. It’s an enormous advantage to have someone like that in my life and I grieve for those women that go through this on their own, or whose partners leave them during treatment.

I no longer experience ‘chemo brain’. I feel as mentally alert as I ever did. I’m also calmer, happier and less stressed than at any other time in my life.

I’m now taking stock and asking ‘What else can I do to continue with my recovery and to improve my health?’ I’ll also be doing this for the rest of my life. I believe that there is no upper limit to how well I can be. To put it another way, no matter how well recovered our bodies seems to be, there is always more we can do to improve our health.

Thanks to everyone that’s been following the blog and the accompanying Facebook page. Special thanks to those that have taken the time to let me know that something they’ve read has helped them with their own recovery. You’re the reason I keep writing.

Go well. Live well. My best wishes for your continuing recovery.

Spare Me The Doom and Gloom

This morning a friend posted a great article about researchers finding a new biomarker for triple negative breast cancer. Like all reports of research breakthroughs, this is happy news. Each day we’re closer to a cure. Here’s a link:

http://www.medicalnewstoday.com/articles/297646.php

This is another step forward but I also note that this article opens with the paragraph we see all the time. It’s this, or a version of it:

‘Triple-negative breast cancer is one of the most aggressive types of breast cancer. It has few treatment options, making the prognosis poor for affected women.’

Actually, in many cases it responds well to chemotherapy, surgery and radiation (excuse me, but aren’t they ‘treatment options’) and the average five year survival odds are 75%, which is SO much better than many other types of cancer, such as melanoma or lung cancer.

I can appreciate that there’s a couple of things going on here. Firstly, researchers keen to attract funding are sensibly using emotive language to generate interest. Secondly, journalists are after an attention grabbing headline. The use of this language to describe triple negative breast cancer is now so prevalent that you’ll find it at the start of almost any article on the subject.

So let’s take a look at the facts.

The ‘more aggressive’ description is accurate. It’s also the reason that many of these cancers respond so well to chemotherapy. It’s now common for triple negative patients to be offered chemotherapy before surgery. There are several benefits to this approach. ‘Triple negative’ is a description of a group of cancers rather than a single cancer. What they have in common is the absence of the three known receptors, oestrogen, progesterone and HER2. But research is already starting to tease this single category out into several sub-categories.

This matters because what works on one person’s triple negative breast cancer might not work on another. Having chemotherapy first allows doctors to see whether or not a particular cancer is going to respond to chemotherapy.

Having chemotherapy first is not usually an option for slower growing breast cancers. Triple negative, on the other hand, achieves a pathologically complete response in around 40% of cases (and this continues to improve with newer treatments). That means your tumours are completely wiped out by chemotherapy.

Even in cases where there’s only a partial response there’s evidence of improved survival rates. In my case, three of my four tumours were gone by the time I finished chemotherapy. So when I read ‘few treatment options’ I get a little annoyed at the doom and gloom. Recently diagnosed people read this stuff and panic. I know I did.

Yes, these cancers are more aggressive, but when it comes to chemotherapy that’s actually an advantage.

There are no ongoing adjuvant treatments for triple negative breast cancer. Those with other types of breast cancer are offered medication that significantly reduces the risk of recurrence. These treatments have been so effective that the five year survival statistics for other forms of breast cancer come in around 86%. These figures improve every year as the impact of new and better treatments affects the statistics.

Remember, you can’t quote five year statistics until you’ve waited five years. What this means is that today’s numbers are already five years old. The other important thing to remember is that the only reason they stop collecting data after five years is because it becomes costly and more complicated. The older we get the more likely we are to die of anything at all. I’ve met people who think that the five year cut off means they are not likely to be here in five years so this is an important one to understand. It’s just the end of the data collection and has no impact on your survival.

If you’d been diagnosed with a hormone receptor positive cancer (oestrogen or progesterone) or a human growth factor positive cancer (HER2) then you would be offered one of the newer medications. These include¬†hormonal therapies, such as tamoxifen or aromatase inhibitors, or treatments that target HER2 receptors, including trastuzumab.

There’s currently research into whether or not tamoxifen might be effective on triple negative, but otherwise these medications are not available to those diagnosed with this group of breast cancers.

This appears to be the reason for the description ‘few treatment options’ but it would be more accurate to say ‘Triple negative breast cancer often responds well to chemotherapy, surgery and radiation but there are currently no available drug therapies that improve long term survival, as there are for other cancers.’

The ‘poor prognosis’ tag reflects the lower five year survival rate but I think calling 75% ‘poor’ is a bit of a reach. If you had three chances in four of winning the lottery, wouldn’t you want a ticket? That’s what 75% means. Until the last two decades or so, a triple negative diagnosis was a virtual death sentence. In that very short time our odds have improved significantly.

Five years is also a point where one of the advantages of triple negative breast cancer kicks in. Having survived for five years we are much less likely to experience recurrence than other types of breast cancer. This is very good news.

I’ve made this point about statistics before but I think it’s worth restating. Statistics are about averages across an entire population. I am not a statistic. You are not a statistic. Every single thing you can do to improve your health and wellbeing improves your personal survival chances.

And that brings me to my biggest issue with this type of headline. Having recently seen the movie The Connection: Mind Your Body, I am convinced of the significance of a whole range of ‘mind-body’ approaches when it comes to living well after cancer. Yoga, meditation, reducing stress, mindfulness and a range of associated complimentary treatments are now proven methods for boosting our recovery and maintaining our good health.

Headlines that tell us we’re facing a ‘poor prognosis’ from an ‘aggressive cancer’ with ‘few treatment options’ have the potential to undermine our treatment and our recovery. Accuracy about the facts is not just about good journalism, it’s also about giving patients something that potentially contributes just as much to our well-being as any new wonder drug.

Hope.