We're ready for this

This week has been a bit of an emotional one. After the shock of realising I would need chemotherapy on Monday, and both of us feeling very low on Tuesday as a result (not helped by Greg's cough disturbing our sleep!).      However, a little bit of time and thought, and we have both got our head around the need for this, and are ready.

We've been stirring up our positivity by quoting songs and films to each other:  For me, Ali in the Jungle by The Hours.

"Everybody gets knocked down. How quick are you gonna get up? Just how are you gonna get up?"

For him, Batman Begins.

"Why do we fall, Bruce?  So we can learn to pick ourselves up".

That, and our natural position of not dwelling on the bad stuff, the stuff you cannot change, we went into the clinic this afternoon with open minds, wanting to get this started (and therefore finished) as soon as possible.

So we're ready for this. Are you? It's complicated, so pay attention.

The oncologist

Teresa is a wiry, sensibly dressed woman, who was warm and friendly.  She has a great technique for gauging your level of interest and understanding, asking me to tell her what I knew about my case, and my understanding of what I'd been told was happening next.    As you might expect, I was fairly comprehensive and direct, straight in with my key question - I know I need Herceptin, but do I definitely need chemo?   As a result, she was frank, clear and gave me information that she might not always share.  For instance, I now know that the tumour wasn't actually Grade 3, even though the biopsy showed that.  The more complete pathology on the lump showed it was a Grade 2 (more info on Grading).  This is good news. Less aggressive or advanced.   I also found out that they grade the HER2 impact, with mine being Grade 3 - lots of HER2 activity, which will most definitely benefit from Herceptin.    Anything lower, and Herceptin might not be so necessary, but it is essential for me.

Do I definitely need the chemo?

My main question. She was honest and said that clinical trials of Herceptin without chemo in primary breast cancer cases had not been done, because it would simply be unethical and impossible to do this.   However, some trials had been done in women with secondary cancer, and had had less good outcomes if they didn't also have the chemotherapy.   As well as having accepted that this is happening, that was enough evidence for me to be convinced.    The other part of the explanation might be seen as a bit 'fear mongering', but the very idea of stray cancer cells knocking about that they can't find by any test or scan does mean that I feel safer having the chemo than not.   To get BC at the age of 36 when I don't have the gene (see below) is unlucky.  To get it again 8 years later, is bloody unlucky.  We have to do all we can.

Which chemotherapy drugs and side effects?

I will have 4 or possibly 6 treatments of chemotherapy, 3 weeks apart.    The main drug will be Taxotere/Docetaxel.   This is the same as one I had last time. They often give it on its own as it can be a tougher one to take. Last time, I needed the Monday and Tuesday off work after a treatment on the Friday, as it made me tired. But this was after already having had 4 'FEC' treatments, and chemo has a cumulative effect.  I described it last time as having the 'volume' switched to low on my energy. 

I may also have a drug called Carboplatin.  The reason the oncologist is debating adding this one, is that it can have benefit in those who have one of the breast cancer genes.   More below.

I will lose my hair, and have the option of using a cold cap to reduce the chances of this.   Last time, I didn't bother and I don't think I will this time.   It extends the length of the treatment (15 mins before, and up to 45 minutes after), is painfully cold, and mainly, it stops the chemotherapy drugs from reaching every part of you. i.e. your hair follicles.   When we explained our thinking to Teresa, she noted that the cold cap isn't allowed for certain cancers exactly because of that. Decision made.

Last time:

Otherwise, side effects generally are mitigated with other drugs. Steroids, anti-sickness tablets, laxatives for constipation, mouthwash for sore gums etc.  

Genetic testing

Although I have been tested twice already for whether I have one of the identified breast cancer genes, and have been told I do not, even Teresa can't quite believe there isn't something going on there, so she is going to write to the genetics team to ask if there is anything else we need to look for.   Research continues, and it has been 8 years since last time, so who knows what more they may have found out?   It is good that every angle is being looked at. 

So, Teresa is going to do some more reading, talking to people and thinking before she decides whether I have both drugs and 4 or 6 treatments, and will let me know.

By the way, interesting piece in the news today. Those with BRCA genes have the same survival chances as those who don't.   And preventative double mastectomies are probably unnecessary.

BBC News: Breast cancer survival 'unaffected by faulty gene'

Herceptin and heart

At the same time as having the chemotherapy, Herceptin treatment will start.   Herceptin can affect your heart function, and did, last time.   So before anything can begin, I will have a MUGA heart scan to check that my heart is OK to proceed.  Teresa noted that last time, the FEC-T treatment I'd had might have also affected my heart, meaning the herceptin following shortly on made it worse.  This time, neither of the chemo drugs should damage my heart, so I may be much better on it.    She is also going to refer me to a cardiologist to look at things properly. Last time, although a cardiologist was written to for an opinion, I never met them, and no-one else could answer any of my questions about it.  I perhaps should have pushed for that. I will this time, but I was confident Teresa has it all in hand.   I was sent for an ECG today, to give them a starting point.

Last time around, Herceptin was given through a cannula/drip.   Things have apparently moved on and it will now be given as an injection in the thigh. This is much quicker, and after the first dose and checking you don't have an adverse reaction, it can be given at home.   I'm hoping that will be possible, even though I don't strictly (i.e. at all) live in the right catchment area. Long story.  Don't ask!

Herceptin is 18 treatments, at 3 weekly intervals and apart from the heart stuff, doesn't have any side effects.   Teresa described it as 'switching off' the HER2 protein that my cancer feeds on, so is attacking the current cancer, rather than being preventative of future ones.

Radiotherapy

Still on the cards, but after the 4 or 6 chemo treatments.   It will be 3 weeks of daily treatments, plus a booster week because i'm young. So, 4 weeks.    

Ovaries, tamoxifen and aromatase inhibitors

After the chemo, and - I think - the radiotherapy, I will have my ovaries removed.   Tamoxifen is supposed to block oestrogen from helping the cancer grown, but whilst on it, I've had an oestrogen receptive cancer.  So lets try an alternative drug.  Those need me to be post-menopausal, and we can make sure this happens by giving me either monthly injections (no thanks!) or surgery.   As my ovary function is on the decline anyway, lets just be sure.  It reduces the risk of ovarian cancer too.    I have more questions about this, but we'll cross that bridge further down the line.   Aromatase inhibitors are the alternative drugs. They mainly act on the oestrogen produced by our body fat, rather than ovaries.

So, there we are.  Waiting for the MUGA scan appointment in the next 10 days or so, then a pre-chemo clinic which will be a week before the first treatment.   Treatments will be on Fridays.      I've already contacted my hairdresser and will get my hair cut short in preparation for saying goodbye to it.   And ask her advice on wig styles. My mum has offered to buy me a good one. Thanks mum!

Thanks for all your support so far.  If you haven't already, and happen to have a pound or two to spare, please could I ask you donate to my nephew's JustGiving page.  He is shaving all his hair off in aid of Cancer Research UK next week.   https://www.justgiving.com/fundraising/joe-delaney6