Why Am I Exceptional?

Yesterday I woke up crying. I couldn’t remember what I’d been dreaming but it’s not hard to guess.

The last few days will be familiar to anyone that’s ever been given horrible news. I forget, briefly, what’s about to happen to my body. Then I remember. Then I get upset and burst into tears. I cry for a while. It helps. I calm myself down with an internal dialogue about my life being more important than my breasts.

But my breasts!

It’s three days since I got the news I need a mastectomy. Here’s what’s happened since then.

On Thursday I had a CT scan of my brain to see if I had any metastatic tumours.  On Thursday night my surgeon rang to tell me the scan was clear (see my previous blog on this).

On Friday I kept the appointment I’d made with my inscrutable GP just to bring him up to speed with everything that’s been going on. I’d initially booked this appointment to get the results of my scan. If there’s one thing I’d change about the current system it would be the provision of report results directly to patients that request them. I appreciate that many people need to have things explained by a doctor, or would prefer to have that opportunity when they get results, but I’m twelve months into all of this and I’ve read more than a few reports by now. I’ve also got a policing background and enough medical knowledge to at least know the difference between good news and bad news. Getting my results ahead of a medical appointment would give me time to process the information and to make sure I had all of my questions ready for my doctor. It’s my body, damn it! They are my results!

My GP didn’t know about the mastectomy. He told me about his sister who decided to have both breasts removed for similar reasons. I was hoping to line him up to drain any seromas that develop after my surgery. You can get a build up of fluid under the skin and this is much more likely following radiation. I’ve got one now in my surgical wound from last week and my surgeon took 20mls of fluid out of it on Wednesday. My surgeon is an hour and a half away so having someone local would be useful. My GP looked cautious, told me that he’d done it once before under direction of a surgeon so he might be able to help but would probably refer me to radiology to have it done under ultrasound. Hmm.

We talked about my general health. My appetite continues to be poor. The ‘metal mouth’ caused by chemotherapy has made a lot of food unpalatable. Things need to be either very bland or very salty to taste any good at all. I’ve dropped about seven kilos since my treatment began. I’m now a size 12 so it’s not a threat to my health. It’s a hell of diet though. I don’t recommend it. I’m countering it by making sure that when I do eat, it’s good quality, nutritional food. For some reason, I have no trouble with anything cooked by my favourite chef and Reef, Terrigal’s top gourmet restaurant. Silver linings.

After the GP we headed in to Gosford to see my radiation oncologist for a ‘what-the-fuck’ conversation. Combining his advice with Kylie’s, here’s what seems to have happened:

Just to recap, triple negative is not one type of cancer so much as a ‘miscellaneous’ category for cancers that are not HER2 positive and that don’t have estrogen receptors or progesterone receptors. So they’re called ‘triple negative’ because they don’t have three things that most other breast cancers have either singly or in combination. Because they make up only 15-20% of breast cancers they are less studied and less understood. They also have a higher mortality rate and tend to be more aggressive than other types of breast cancer. There’s more than one type of triple negative breast cancer and researchers are still working on defining them. What works for one might not work for another.

I had neo-adjuvant chemotherapy (before surgery). It works well with aggressive cancers like triple negative breast cancer. It treats the whole body systemically and doctors can monitor your tumours to see if the chemo is working. Post surgically, chemotherapy is guesswork.

The other advantage of neo-adjuvant chemotherapy is that triple negative breast cancer seems to like scar tissue, and scar tissue seems to make this type cancer resistant to treatment. If you have triple negative surgically removed and then have chemotherapy the poor blood supply to scar tissue may effectively diminish the efficacy of treatment.

The earliest form of breast cancer is called ‘ductal carcinoma in situ’(DCIS). This means it’s confined to the ducts within the breast and hasn’t yet become invasive. DCIS is now the subject of debate, with some calling for it to be reclassified as ‘pre-cancerous’ rather than cancer, and with researchers finding that some DCIS goes away on its own. Doctors would not normally treat DCIS with neo-adjuvant chemotherapy because it is not aggressive and does not respond to it.

My chemotherapy protocol killed off three of my four tumours. The fourth tumour was surgically removed. It still had pockets of active cancer but came away with clear margins of non-cancerous cells, which usually means you can be reasonable relaxed about a good prognosis. Added to that, I was ‘node negative’ which means there was no invasion into my lymph nodes. Also good. But there was DCIS under the tumour.

It seems that what’s happened is that some of that DCIS has been dormant during treatment, or rendered dormant (but not dead) by the chemotherapy. It’s then remained dormant during radiation. My radiation oncologist tells me that this would prevent the radiation treatment from ‘mopping up’ those cells. Over time they’ve become active again and that’s why I’ve had recurrence.

It’s also possible that my tissue was ‘resistant’ to the radiation. I’ve been doing some thinking about this and I believe there’s a flag here for further research. One of the reasons for doing neo-adjuvant chemotherapy is to preserve as much breast tissue as possible. When I had my first surgery, my surgeon removed the active tumour but left behind the marker clip that had been placed in the middle of the original four tumours (deliberately) along with some of the tissue that previously held the three expired tumours. It’s possible that this particular tissue, having been effectively scarred by the chemotherapy, was more resistant to the radiation.

I’m going to suggest to my surgeon that this could be the subject of data collection. It might also be prudent to remove all previously effected tissue following neo-adjuvant treatment, even where there’s been tumour death. This would mean accepting a poorer cosmetic result, but possibly a better chance of avoiding recurrence. This is just speculation. Both my surgeon and radiation oncologist are shocked by what’s happened and neither have seen it before. I might just be exceptional.

Neo-adjuvant treatment is relatively new. Monitoring those of us that have had it is worthwhile. I’m not sorry I had it. If I’d seen a different surgeon I probably would have been advised to have a mastectomy followed by chemotherapy and radiation. I’d be no worse off and it’s possible that the time taken to commence chemotherapy could have resulted in metastatic cancer. It’s easy to look back and say that I could have avoided a lot of pain and distress by having the breast off at the beginning, but my outcome has been atypical. There was every reason to attempt to save the breast and I’m not sorry that we tried.

Neo-adjuvant chemotherapy can also substantially improve survival odds, particularly if you can achieve a full pathological response (all cancer dead). It was worth trying to achieve that, even though I didn’t.

My biggest regret is that if I’m right, and the tissue damaged from chemotherapy turns out to be the reason for the recurrence, then that tissue has now been removed and it’s possible that I could keep my breast without further risk. Only time and research will tell, and I can’t wait. This is one of the frustrating things about cancer treatment. It’s dynamic. There’s so much research and ‘best practice’ is changing from year to year. There was a time when all breast cancer patients were routinely given a double mastectomy. Now they know that for most women this does not improve their chances of survival when compared to breast conserving surgery but it took several years and many brave women to prove that. Sadly, I’m the exception.

The good news from my radiation oncologist is that he doesn’t think this recurrence has affected my survival chances (although with such an unusual outcome, nobody can be sure). For triple negative breast cancer there’s a 75% five year survival rate. One in four of us will die within five years. Three in four of us won’t. Okay, not cheery statistics, but remember that as we age  our chances of dying from anything at all increase. We are all going to die of something. At 50, the average life expectancy is 32 years. By 60 that’s dropped to 24 years and by 70 you’ve got an average of 16 years to live. For a 45 year old Australian the risk of having a stroke by age 85 is one in four for men, and one in five for women. Each year more than 10,000 Australians die of heart attack. It helps to keep things in perspective.

My mitotic rate (the speed at which my cancer reproduces) is 20. This is high but it’s unchanged from my original pathology which is good news. My cancer hasn’t mutated in response to treatment. I had no nodal invasion so my radiation oncologist is hopeful that the cancer hasn’t figured out how to migrate to other parts of my body. It looks like it will only grow in breast tissue. No breast tissue, no cancer. Let’s hope so.

I asked my radiation oncologist if he or the nursing staff attached to the practice can drain seromas. He tells me he can but prefers not to unless they become really uncomfortable, as drainage often results in infection. Better to leave them and allow the body to reabsorb the fluid as I heal. This is good to know.

As back up,I left a message for the breast care nurse at Gosford hospital. They’re experienced at draining seromas along with all of the other great support they offer. I was shocked to discover that this large public hospital covering a population of over 300,000 people in an area with a high rate of breast cancer has one part-time breast care nurse. One! The Mater at North Sydney has two working full time, with trained staff to back them up when they take leave. Worse, I’m told that the hospital is considering abolishing the position due to funding restraints. I might need to start a campaign when I’m finished with surgery.

I also saw a cosmetic surgeon yesterday about reconstruction and I’ll probably write about that tomorrow. Short version; not having it, but I was, surprisingly, tempted to consider it.

Finally, here’s my husband’s Facebook status from yesterday:

‘My wife has no hesitation in having her breast removed to remain alive. The next time I hear the phrase “fights like a girl” I will assume it’s a huge compliment. I wish I was that strong.’

How I love him. Not so sure about strong. It’s not like I have a choice.

Reblogged from  http://positive3neg.wordpress.com

My ongoing blog about the increasingly difficult task of staying positive in the face of a diagnosis for triple negative breast cancer