A little word beginning with: R

Re… Re… Remission.

There has always been one question that causes me to pause. Not because the question upsets or concerns me, but because I have never known the answer. (Google hasn’t been much help for this one.) The question is:”Are you cancer free?”

It’s a hard one to answer because every cancer patient’s situation is different. Some patients say they are cancer free from their first check-up post treatment. Others mark it from their final round of chemo; radiation; or surgery.

So when am I worthy of the nickname: NED (No Evidence of Disease)?

My theory is this: If I had chemo and double mastectomy for ‘preventative’ purposes, haven’t I been cancer free from when the lump was removed last year? My medical team are yet to mentioned the word ‘remission’, so I’ve always assumed it hasn’t applied to me yet.

To understand my mindset, here’s a recap of the past year (for those who missed the start of the journey).

September 2, 2013. Surgery #1: Lumpectomy and Sentinel Node Biopsy. The cancerous lump was removed, along with three lymph nodes to test and determine if any cells had escaped. (They hadn’t! Phew.)

September 6, 2013. Surgery #2: Re-excision. When they remove a mass there needs to be a clear margin of healthy, cancer-free tissue surrounding the cancerous mass. The pathology report showed the lump was bigger than they thought and they didn’t have a clear margin, so they needed to take out more tissue. The clear margin was achieved after the second surgery.

October 11, 2013. IVF: Extraction of eggs. Sort of a surgery but not. Let’s not count it as an official surgery.

October 16, 2013, First round of chemo: The moment we realised I was allergic to chemotherapy drugs. Oh joy.

January 31, 2014, Last round of chemo: Finally…

July 31, 2014, Surgery #3: Double mastectomy with reconstruction. All tissue removed was clear; no cancer cells identified.

And we’re not at the end yet! In the future I will need a fourth surgery to insert the implants; a fifth surgery to re-create nipples, and tattooing to make them look real.

The next stages of the reconstruction process may not be completed until 2015 or 2016!

So, do I really have to wait another year, or more, to celebrate being in remission, or NED?

Knowing my treatment is still ongoing, all preventative, when would be my “end of treatment, I am now cancer-free date be?”

It shouldn’t be after my double mastectomy – that was preventative, nor should it be after I finished chemo – that was preventative too. When was I truly cancer free? When was there no evidence of any cancer cells in my body.

That, my friends, was after my re-excision. That was September 6, 2013. That was a year ago today.

Without wanting to get too carried away and excited about this, I thought I would put the question to my oncologist, Dr Oliveira (I had a follow-up appointment with her last week). After a long-winded explanation about not being labelled ‘cured’ for another 15 years, so said she was happy to say I’m in ‘remission’. I then asked when my remission technically started. I told her my theory, and she agreed with it. I have been in remission for a year!

I’m yet to meet with my surgeon and ask if he agrees with my theory – he probably won’t. I’m sure he’ll have his own theory about my remission date.

So I’m throwing caution to the wind and marking today as my one-year remission anniversary. (Maybe NED should be my nickname instead of Rocky… not sure it has the same ring to it). Only 14 more years until I’m cured (apparently).

So pop some bubbles, grab a beer or go hard with a Whiskey. I’ve got a hot brunch date and a glass of bubbles with my name on it.

Bottoms up. Salud. Prost. Kippis. לחיים. Gesondheid. Salute. Na zdravi. Şerefe. Terviseks.

 

 

 

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“Hey. I like your genes.”

After five weeks of waiting, the results are finally in. The lab technicians have put eye to microscope and examined my cells. On the other hand, I’ve been patiently waiting. Making the most of feeling healthier and stronger, I threw myself into as much physical activity as possible. Of course I signed up to a CrossFit competition. Rubber arm at its best…

Today; Thursday, March 6th. D-day. I’ve been excited for this day to arrive! For me, getting my genetic test results is the final piece of the puzzle. Well, so I thought… As I drove to the hospital I started feeling anxious. My normal tough-as-nails-got-it-together-self started to unravel. It was 4 pm and we were finally sitting opposite Dr Gattas, genetic counsellor. Without hesitation he slid the single sheet of white paper across the desk. In front of me he pointed out the word: Negative, a very clear negative result to carrying the gene mutation. This is a positive result in many regards: my chances of a recurrence of breast cancer or ovarian cancer are reduced significantly. The room was silent. I should have been celebrating but all I felt was unease. Mentally, I thought I was prepared. “I had my plan of attack but now I’m not so sure,” I said. If only things were black and white. I was suddenly surrounded by grey.

Before receiving the results I had decided on a game plan (as per doctor recommendations): a positive result would mean surgery, a negative would see me start 6 weeks of radiation. If they couldn’t give me a definitive yes, or no, it was better to assume I did carry the gene mutation, than didn’t and therefore surgery would be the chosen path.

But Am I making the right decision? Recurrence is the fear that drives treatment. Isn’t that why I had chemo? Isn’t that why they recommend radiation? It’s all “preventative”, preventing a recurrence. Radiation only kills the tissue of the affected breast. Could I have a recurrence in the other breast? Even if I choose to have a double mastectomy, they can never remove all your breast tissue. It doesn’t eliminate your chances of having a recurrence (but reduces it by a great deal!). Both options have pros and cons; there is no “easy” option.

Once again, I’ve exhausted the majority of articles and research results available on the Internet. And I thought I was content with the findings. Listen to the experts’ advice, do your research and trust your intuition. “Sometimes you have to trust your gut feeling.” Dr Gattas voiced.

So what is stopping me from feeling 100% confident with the doctors’ recommendations? If it’s not genetic, then what has caused it? That is a question you could spend the rest of your life trying to answer. And I’m not opening that can of worms (well maybe a little). My cancer was hormone sensitive. Meaning: it’s possible my hormones played a significant role in the breast cancer. If that’s the case, the hormones will always be there. Isn’t that just as bad as carrying the gene mutation in some regard?

I hadn’t thought of this until the past week. I’ve been researching a drug that I’m “eligible” to take for the next 10 years. Without going into too much detail (that’s another blog on it’s own), this is what it says, “tamoxifen blocks the effects of estrogen in breast tissue.” So, if they want me to take a tablet to stop the hormones from causing cancerous cells to form in my breast tissue, wouldn’t it be in my best interest to not have the breast tissue there in the first place? Wouldn’t that reduce my chances or recurrence even further? (Feel free to chime in any experts in this field.)

I have decided to delay radiation by an extra week and meet again with my surgeon. More discussions are required until I feel comfortable with my decision. I thought I would have the final piece of the puzzle today… I was wrong.

Practicing Patience

Treatment is like a steam train. Departing station: Cancer. Final destination: Cancer-free. It splutters along, stopping at a variety of stops along the way: surgery, chemo, genetic testing, radiation and more surgery. The journey and order of stations is different for everyone. Unfortunately there is no express service available for this journey. I’ve experienced a few delays along the way, stopped at a few extra stops than first planned, and now it seems the final destination is a little further away, again. My genetic testing always threatened to slow the train. And it has.

This Friday I was booked to receive my results. Let me emphasise “was booked”… until they called to advise there was a delay examining my bloods. The driver’s put down his shovel and stopped loading the coal. We’ve come to a stop… again. Mid-station. The follow on affects of this delay are disastrous; I now have to forgo my plans of flying to Israel for my girlfriend wedding in April. Sigh. It was always going to be tight with all the previous delays, but it’s officially no longer an option. Deep breath’s; bigger picture. Time to muster up some patience.

My woes don’t stop there. This past weekend I was due to go to Melbourne for a post-chemo celebratory getaway. I patiently waited the recommended three weeks after my last round. I had an extra week up my sleeve while waiting for my genetic results, and deciding on the next stage of treatment. So, I planned a sneaky trip to catch up with lots of loved ones. Yet, just when I thought I would be getting back on the bike, into the gym, out for a run and a trip to Melbourne, the universe not so discreetly decided…not yet. I caught the horrid cold that’s circulating. Although, the blame may not lie with the universe, it may have been my own undoing.

Doctor: “… and you’ve been so good not being in large crowds.”

Me: “I know… I don’t know where I caught it.”

I chose not to tell her I’d been in the ‘Loose Yourself’ section at the Eminem concert days earlier. Shhh.

Ok. No more negatives. It’s ok to recognise the negatives. Acknowledge them, and then move on.

The positive I can get out of this is I have another week to recover from the cold and get in some physical activity. Movement with the body is medicine for the mind.

To all my friends that have a ‘Rochelle gets genetic results’ reminder in their phone for Friday, reset it to next Thursday.

That’s all folks…

Busy lil’ Bee

WHAT A WEEK!!! I know I’ve preached in the past about my self-inflicted rule: ‘one activity a day’, let’s just say, it’s been completely blown out of the water *smacks hand*. Just when I thought I had recovered from Christmas and New Years, it’s been an extra lively week: A 1000 word story due, jobs to get parkrun ready for its first trial, visitors from London out in ‘da Switch, round three of chemo, and one more thing… one VERY important piece of the treatment puzzle… I had my genetic consultation. Bear with me, I’ll explain.

I have always felt it important to have my genes tested: to know if the cancer was inherited due to a gene mutation, or environmental. It helps make the best, qualified decisions about treatment. Knowledge is power. My proposed treatment plan is as follows: six weeks of radiation to follow chemo or, if my genetic results show that it is a gene mutation causing the cancer, I will choose to have a double mastectomy, instead of radiation. Before someone overseas reads this and starts questioning me, this is based on Australian practice. I know patients in Canada still undergo radiation, even after having a double mastectomy. I’m grateful to be in Australia right now.

I was also extremely lucky – blessed – fortunate to get an appointment this week! My original appointment wasn’t until March 26. The timing was definitely not working in my favour. They wanted to start radiation at the end of Feb. I could see things getting tricky as it takes four to six weeks to get your results back after your blood test.

I asked, “How long can I delay radiation to get my genetic testing done. Would it be safe to delay radiation by a few months? Is that standard, or allowed practice?”

Still no answer! I put it out to the universe, with my positive thoughts (and I’m sure many prayers from mother and her church friends) that I would get an appointment earlier. And I did. Phew…My blood test is booked for Jan 28 and my follow up appointment to receive the results Feb 28. At this stage my “end of treatment” date should only be delayed by a week. Good: I’ve got things to do!

Enough about me; let’s talk about genetics.

I have pulled some information from the not-always-trusted, World Wide Web. It seems accurate, though:

Some people inherit altered genes that may predispose them to developing particular cancers. For example, a woman who has inherited a single altered copy of one of the specific breast cancer genes (known as BRCA1 and BRCA2) has a higher risk of breast and ovarian cancer than a woman who inherited two normal copies of both genes. However, only around five out of every hundred cases of breast cancer may be due to an inherited genetic predisposition.

Confused?

Let me take it out of the scientific context to the real-life world:

Unless you’ve lived under a rock this past year, you probably heard that Angelina Jolie had a preventative double mastectomy. Due to her family history, she elected to be tested for the gene mutation. It showed that she carried the BRCA 1 gene mutation. Her decision was to undergo a “preventative” double mastectomy.

Her statistics of developing cancer by caring the BRCA1 mutation were as follows:

  • 87% lifetime risk of developing breast cancer
  • 40% lifetime risk of developing ovarian cancer

By having a preventative double mastectomy, her chances of developing breast cancer dropped to 5%! Now, for me, that’s a no-brainer.

Since I already have cancer, I only think in terms of reoccurrence. Armed with notebook and pen for my appointment, we made our way to the Wesley Medical Centre to meet with Dr Michael Gattas. Note: the notebook seemed like a wise addition after I put the ice-tray in the fridge that morning… clearly suffering chemo brain.

Here is a snippet of information provided by Dr Gattas…

Firstly, anyone under 40 who develops early breast cancer has a 10% chance of carrying the gene mutation. Not much, really. Also, it was interesting to learn that the BRCA gene mutation can come from either parent. There is always so much emphasis looking at family history on the mothers side: Did you mother have breast cancer? …Sister? …Grandma? …But interestingly, your father can pass down the BRCA mutation.

Commonly, people think that once you have a double mastectomy, you can’t get breast cancer again, wrong! I know this shocks most people. Even though most of the breast tissue is removed during the mastectomy, a tiny amount usually remains. Also, the BRCA1 and BRCA2 gene mutation also affects your ovaries. If you carry the gene mutation, you have 30-40% chance of being diagnosed with ovarian cancer (before you’re 80). Wow. Lot’s to think about, not only for me; but my sister; and mother.

After chemo finishes, depending on my genetic results, I will happy go ahead with radiation, or back under the knife. It’s an easy decision for me, but I know others have a different mindset: I haven’t had a child, what if I want to breastfeed later in life? Dr Gattas also raised this point. He suggested some young woman whom receive a positive result for the gene mutation, will delay surgery until after having children. For me, this doesn’t seem wise. I am not supposed to have children for two or three years, or longer. Reoccurrence is higher in the first five years. I would rather give myself the upper hand as much as possible…but that’s just me.

I should probably finish the blog here, but I can’t sign off without giving a mini shout out about our first parkrun trial! Yes, I know you have heard me go on, and on about parkrun. It’s finally here. Some questioned the timing of the first trial; two days after chemo… No problem! With pills on hand, and an excessive amount of support, I wasn’t worried a bit. It was a small turn out; which in hindsight was a good thing. It went off without a hitch; technology included. All eleven runners enjoyed the course – hills and all.

After a post-parkrun breakfast with some good friends and cuddle with Baby Mia, a dash home to upload the data, it’s now time for a nap before my next outing of the day.