On 17 December 2010 I was diagnosed with multi focal invasive carcinoma in my right breast. Multi focal means many, in my case, 5 approximately one cm tumours.
My cancer was ER negative (oestrogen negative) and HER positive (HER2 receptor positive). A very aggressive kind, common in 'younger' patients. It was 'just' Stage II. That is, if it had not got 0.1 mm into one lymph node, it would be Stage I. I don't know what grade it was. I never asked and it doesn't matter. Not to me anyway.
(By the way, I found out about this sitting in my car outside the place where I had just had an MRI. I read the little report which was in a sealed envelope addressed to my doctor attached to the scans. I just had to know and I wanted to have time to prepare myself. When I apologised to my surgeon for reading the report addressed to her she said 'I would have done that too.')
I have had two pretty horrible operations including a reconstruction and removal of lymph nodes and a big chunk of flesh from my underarm, and between January and 20 June 2011, twice weekly and then weekly chemotherapy (AC and Taxol).
I have written some posts about chemo, you can check them out on MPTH. I went okay with chemo. Which is to say it was indeed, complete and utter crap, but it was not as bad as my overly fertile imagination envisaged. Like everything, your mindset is so important. And I expected to spend six months vomiting, and when I didn't it somehow seemed better. And easier. And the other thing is, like childbirth, you kind of forget how bad it is.
I did not need radiotherapy because I had a mastectomy, not a lumpectomy. I also had chemo post surgery. Many countries do chemo first to try to shrink the tumour. Many people also choose to do a reconstruction later, but I got it all over with in one fell swoop. And finally, I am on Herceptin for another 9 months. (See my comments on Herceptin below, and also see here).
One thing I can say for certain looking back. It has changed my life irrevocably.
I also know that for about 6 months before I was diagnosed I felt terribly tired, and quite unhappy. Being diagnosed was, in a strange way, a relief, because at last I knew what was wrong with me. (And as an aside, just to demonstrate how random this was: I am not overweight, I exercise regularly with a trainer, I eat really well, I don't smoke, I breastfed my children and there is no breast (or really any other) cancer in any branches of my family.)
When I was diagnosed I was quite overwhelmed by support, love and advice from family, friends, work colleagues, complete strangers, miscelleanous acquaintances and blog friends. I still feel the strength of that.
I recently had a friend diagnosed with cancer and even though he didn't ask for it, I gave him my top 12 tips, based on my recent experience. Here they are:
1. Take one day at a time. Easier said than done when your mind is racing forward to the future and whether you will even be a part of it. But if you just focus on today and get through the day then the rest seems to take care of itself.
2. Take notes when you see your medical specialist - sometimes the news is confronting and it is quite common to completely forget what you have been told. Write down questions as they occur to you between appointments. I used my IPhone notes app for this - when crazy thoughts came to me I made a note so I could then bore my oncologist with them.
3. Don’t look at the internet too much – it can be tempting and I would be lying if I said that I didn't spend quite a lot of time googling odd symptoms and reading medical websites. However, it can drag you down a bit particularly if your cancer is advanced. Also, everyone's reaction to and side effects from treatment are different. Always remember you have an individual response which might be better or worse than Sarah from San Diego. Also remember that the treatments are very different in the US and UK to Australia so it can be a bit misleading.
4. Accept all offers of help. This may be hard, it was for me. (And here is a tip for caring friends - don't say 'Is there anything I can do?' Just do it - arrange a cleaning service, drop round a chicken casserole, whisk the children away for a couple of hours. Don't ask, just do. A friend dropped round a bottle of French champagne when I was diagnosed. That might seem strange but frankly I welcomed it. And we drank it.)
5. Keep track of all your medical expenses – in Australia your out of pocket medical expenses (ie effectively the gap Medicare doesn’t refund to you) will entitle you to a tax deduction or rebate or something if they exceed a certain threshold (not sure what it is). Just whack them all in a folder.
6. Take sleeping pills if you need to – the anti-nausea drugs I was on had cortisone in them and I would be wide awake at 1 am in the morning – not nice. Chamomile worked for me sometimes and there is an excellent over the counter product in Australia called Restavit - just one quarter of a tablet would give me a good night's sleep.
7. Take all the medication they give you – this is challenging – I went from being someone who didn’t even take a Panadol for a headache to someone who was taking more than 20 various pills a day. Just do it and don’t think about it.
8. Always take a book with you to treatment and appointments. And read as much as you can. It is transporting and diverting. You will spend a lot of time sitting around. And if there is anything more depressing than waiting room it is the out of date magazines lying in wait there for you to read. Who really needs to see Kim Kardashian all glammed up at some pointless gala when you are about to talk to your doctor about potentially life and death matters.
9. Find something which helps calm you and do it as much as you can. Exercise, write, blog, watch 1940s films on TV, read the Daily Mail online, cook tomato sauce, scrub the floor, go to work, buy some nice cheap denim online, whatever it takes. Just do it.
10. Stay calm and strong. Hopefully, it will be over before you know it and you will be able to get on with your life.
11. Ignore the Think Positive Crowd. The fact is, whilst a sensible outlook should prevent lapses into weeks of crying hysteria, you cannot be positive the whole time. It is normal to be upset. And cry, and scream, and shake your fist at the world. The pressure on people to look on the sunny side, and think your way out of illness is all pervasive and just plain wrong. Don't feel bad if you feel sad or angry. And don't blame yourself if you can't cure yourself of cancer by positive thinking. No one can.
12. Let someone come to chemo with you. I resisted this initially but my mother insisted for those times when my husband couldn't come. And looking back, I am so grateful. Just to have someone to sit by my side for the duration made a big difference. Because sometimes, it is true, I sat there with tears in my eyes.
Oh and one more thing. I found complementary therapies very helpful. I have a great Chinese doctor and homeopathy. I would never ever let these replace conventional medicine but they brought great relief in terms of the side effects.
Of all the many (mostly horrible) things I have learned from having cancer, this is the most important. Primary breast cancer is in fact very curable. The treatments have come on madly in the last 10 years, and one's prognosis is quite good, even if the tumour is large or had spread into the lymph nodes.
What is not so good is what is called secondary cancer. This is when the cancer spreads, or metastasizes, into far away parts of the body.
(It can also recur locally ie in the breast (that is if you have any left!) or regionally, eg in the nodes around the neck).
In the case of breast cancer, the most common secondary locations are liver, bone, lungs and brain. So, if you have a recurrence in the liver, you don't have liver cancer. You have secondary breast cancer in the liver. And the treatment you get is different to the one you would get if liver cancer was your primary.
The prognosis for secondary cancer is, terrifyingly, not so great. It cannot be cured. It is true though that many women live for years and years with secondary or metastatic breast cancer. It just depends on how you respond to treatment and how far it has spread.
I know of a woman who has had a recurrence and has been on Herceptin for 10 years. They think she is one of the longest Herceptin patients in Melbourne if not Australia. Although HER2+ cancer is dangerously aggressive, there is one up side, which is that it can be treated with Herceptin. And as my oncologist says, 'we put a lot of faith in Herceptin'. That makes me feel both comforted and scared.
Now that my chemo is over, all I can do is wait. Generally speaking, the more time passes the lower the risk of the cancer coming back but really, it is never actually over. This is pretty confronting. For me, they never found any cancer anywhere else and the chemo was out of an abundance of caution. But that is not to say a few stray cells didn't find their way somewhere else. I have to learn to live with the fear of this. Sometimes that is easy, sometimes it is very hard and I find myself obsessing over minor twinges and bits and pieces. But there is nothing to check, and nothing to scan.
The question now is whether those cells, if they exist, become real cancer. If they do, I may not know for years.
All I can do is live my life, eat well, be happy and try not to dwell on it.
UPDATE - September 2012
I finished my Herceptin treatment in March 2012. In total, including surgery, I had 16 months of treatment. This is a long time. But not as long as those who are on hormone therapy for 5 years post treatment.
In terms of recurrence, my onc has explained it to me thus: because Her2 + cancer tends to be more aggressive, the risk of recurrence is greatest in years 2 to 3 post diagnosis. If you have hormone positive cancer, the recurrence risk can continue for many more years afterwards. It is for these reasons that if you have breast cancer you never really go into remission unlike say, blood cancers like lymphoma.
This means that for me, the next 18 months are very important.
Looking back, I think that what I would like to change, and what I think people undergoing treatment need to understand, is that the side effects can continue on for quite sometime post chemo and treatment. I am not trying to be alarmist in saying this, but it is very important to be prepared. When you are undergoing treatment, it takes all one's strength just to get through it. Then when it is over you think 'now, I can be completely normal'. But the truth is you are never completely normal. You will be changed forever, not just mentally, of course, but in many physical ways.
For me, I have had some ongoing issues. Some are very minor, and some are chronic. Only now do I feel they are going away a little bit.
For me, the first lot of chemo, the AC, was in fact the easiest. This is because although it makes you feel like vomiting for 8 weeks straight, at least it passes. The problem with Taxol, which was my second chemo, is that it can give you nerve damage which goes for some time.
To be specific:
- my eyelashes still periodically fall out. I plan to do a post on this, because I have tried it all, and there are things which can help.
- my toenails stopped growing when I started Taxol in April 2011 and are only just coming good. Yes you heard me. Only just now.
- the Herceptin gave me a sore shoulder (infusion side). Do not believe the hype. Herceptin does have side effects. It is a great drug but it is not a miracle drug.
- Herceptin also gave me a runny nose.
- the very worse thing of all, have been the ongoing aches and pains. These are caused by Taxol. I have done a lot of experimentation on this, and I use a number of things to fight it. Firstly, I do proper weightbearing exercise. By which I mean running, Pilates, weights. I do this twice a week without fail. I did this all the way through chemo through even when I felt like vomiting and fainting (often at the same time). This is the only thing which helps, and it really does. Second, I take apple cider vinegar (2 tsp in water once a day). Three I take vitamin D. Not sure if that helps in any way. These all seem to work pretty well.
I can't bear to think like that. I feel so much younger and more resilient in most ways. And for that, I am prepared to put up with the occassional aches and pains.
A final issue has been anxiety. Do not mistake anxiety for a heart attack or lung cancer, as I did. I know anxiety is normal. But I hate the feeling. I did a meditation course at the Gawler Institute. And this helped massively. Every time I feel it coming back on I get back into meditation in a disciplined way, and things look up.
I would be lying of course if I said I do not quite constantly think about recurrence. I have attached here a link which I think captures brilliantly the terror that one goes through.
As I have said to many people, I can most certainly come to terms with the fact that I might die young. I have had a great life, and I can go quietly and peacefully. What I find very difficult to cope with is the idea of leaving my small children with no mother. That is something I cannot come to terms with at all. It seems so unfair, and unjust. And that is what I am fighting to prevent.
I know I say above not to read the internet. This is for fear reduction reasons and also because there is a lot of crap out there. However, accidentally and only just in the last week or so, I found this website, run by an oncologist who practices at Westmead in Sydney. He is called Richard Kefford, and I can say with some certainty, that this site has by far the best, most cogent, and clear information about breast cancer, treatment, side effects and the different chemotherapies which I have to date come across, and I can assure you I have spent a lot of time googling things.
And finally, a bit of light relief
(thanks to Cyanide and Happiness)