Information overload

On Wednesday morning, Dermot and I went to the Breast Unit to see my consultant, with all the results after the MDT discussion. This was a really nervous time for me, as I knew how bad things could be, depending on the various scan and receptor results.

Firstly, the CT scan showed that it hadn’t spread, and was confined to the breast – phew.
Secondly, the receptors were the right ones – ER positive and Her2 negative – phew
Thirdly, the MRI showed that my other breast was clear. However, the cancer was much larger than the lump seen on USS.
Finally, the pathology was complicated – I had a very busy breast full of everything, but the cancer was mixed ductal and lobular. The lobular cancer wasn’t a surprise to me – lobular cancers are usually occult on mammography, and are often larger on MRI than USS.

We were then told that I would be having neoadjuvant chemotherapy, before surgery, and would see the oncologist that afternoon. I would have my chemo at West Suffolk. The next decision would be for me to decide where I wanted the surgery. This was going to be very tough for me. Do I have it at home, in a hospital which I love , where my husband and I are well known, where I would operated on by a close friend and colleague I trust, with theatre staff that I have worked with for several years?

On the other hand, I could take my pick of the breast surgeons in the UK, with the inside knowledge that I have, but this would mean being away from home, and travelling back and forth for check-ups.

Then there was the issue of what operation to have (assuming the chemo didn’t shrink the cancer to a very small lump, I would need a mastectomy and reconstruction). I was still thinking how I would advise myself if I saw me in a clinic, and how I would treat me surgically, instead of thinking about what I actually wanted. It was going to be very hard for my consultant to operate on me as well, especially if their were complications, which are entirely possible with any reconstruction.

Breast Clinic
On Wednesday morning, Dermot and I went to the Breast Unit to see my consultant, with all the results after the MDT discussion. This was a really nervous time for me, as I knew how bad things could be, depending on the various scan and receptor results.

Clipping
After the clinic, I went round to the USS department to have a clip put in the cancer. This is standard for anyone having chemo up-front. Some cancers shrink to almost nothing on MRI, and the surgeon needs to know which bit of the breast to remove. A clip is put in the middle of the tumour, which is easily seen on an USS at a later stage. This meant more local, and another needle into my poor bruised breast.

Lunchtime
Dermot had some work to do, and I had an hour or so to kill before the next appointment. I went for a walk outside, and then went to get some lunch to eat in the car. I bumped into my consultant in the shop, and it felt really awkward. We were no longer saying “Hi” and being friendly. This had to happen, because she was now my doctor, but suddenly I felt the loss of our friendship (although temporary), and it made my eyes well up.

I rushed back to the car and started crying – not because of the cancer, but because of how my life was already changing. My wonderful husband rang me, and I cried on the phone, so he came to the car to have lunch with me and give me a hug and a kiss.

Oncology Clinic
This was relatively new to me. Although I briefly discuss chemotherapy with my ladies, I don’t sit in when the oncologist goes through the nitty gritty details. I had done a lot of reading in the last couple of days and nights – various blogs and websites, but still wasn’t sure what I would be given, and what the specific side effects were. Since going public on Twitter, one of the oncologists I regularly correspond with about breast cancer had been in touch advising me what the latest research was and what he would give me. Again, the power of twitter had amazed me. What I didn’t want to do was go in and tell my oncologist what I thought I needed, but it was important for me to know the evidence behind the various regimes, and at least be able to question things if I wasn’t sure. Not quite accepting the patient role …….

We were ushered in, and met the oncology consultant (another lady – and therefore an all female team looking after me), and one of the oncology specialist nurses. I was going to be given three rounds of Docetaxol, and then three rounds of FEC, all on three-weekly cycles. I was going to be given GCSF injections to give myself at home, to boost the bone marrow and prevent neutropenic sepsis, and steroids to take the day before the chemotherapy and on the morning of chemotherapy. I had had bloods taken before the MRI, so didn’t need to have them taken again. I was pleased with that. Bloods can now only be taken from my right arm, and after bloods and 2 venflons I was quite sore and bruised.

Do I try to keep my hair?
veryone before now had told me not to cut my hair short because I might not lose it, and to try the cold cap. This is a very tight fitting cap that fits very close to your scalp that you wear for a couple of hours before and after your chemo infusion. It lowers the temperature of your scalp, and reduces the blood flow to it, to try and reduce the effects of the chemo, and prevent you losing all your hair. People I know who have tried it only tolerated it for one session, and said it was like having an ice-cream headache for 4-6 hours. Another downside is that the chemo process takes 4-6 hours instead of 1-2 hours, and you are hooked up to a drip for that time. It does work for some people, but I wasn’t too bothered about losing my hair. I’ve cut it all off from almost waist-length to above my ears before, and I know it will grow back. Also, it can induce vascular headaches in people prone to migraines, which I am. So no cold cap for me.

Then I was given a brief run-down of the side-effects (more to come in a later blog), and the consultant examined me. The only sour note to the clinic was that the specialist nurse left during the consultation to answer her bleep, and the consultant had to find another nurse to chaperone the examination. I always make sure that my mobile is switched off, and my nurses leave their bleeps in the clinic hub, so we cannot be disturbed when breaking bad news.

Children…
he final thing we had to discuss was my fertility. Dermot and I don’t have children (he has a daughter). We had been discussing for a year or two whether we would have children of our own, but hadn’t reached a formal decision, although the answer was probably going to be a ‘no’. Suddenly that decision had been taken away from me. I did have the option of having one cycle of ovarian simulation to then freeze my eggs, but the risk is that it could encourage the cancer, to grow and spread in that time, because the cancer is sensitive to oestrogen. The oncologist wasn’t keen and I didn’t want to take the risk. There was an 80% chance that chemotherapy would switch off my ovaries and induce the menopause. If I was in the 20% who still had some ovarian function after chemo, there was the chance of possibly trying to get pregnant in 2-3 years time. This would mean stopping Tamoxifen for a year, but again, the risk that pregnancy and the hormone surges could trigger a recurrence. So although it wasn’t a definite ‘you can never have children’, it was as near as damn it.

So in the space of 2 minutes, my husband and I had to agree that we wouldn’t preserve my eggs, and having children was no longer an option. Not how I wanted to come to that decision.

Leaflets and more leaflets
We then spent some time with the specialist nurse, who gave me another pile of leaflets telling me about the side effects of chemotherapy. I was also told to take my temperature (but not what should kind of thermometer to use and how often – daily? hourly? – I do like things to be precise…..). I was told that if my temperature goes above 37.5 C then I needed to call an emergency bleep number, and would either need to go to the oncology day unit or to A & E to get antibiotics (more on this in another blog). And then I was given yet more leaflets about the cancer centre, and hair loss.

Port (no cheese and biscuits…)
The final decision was chemotherapy access. Chemo can burn your veins and stain the skin, so they like to give it through a central vein through a long catheter. I was given three options. The first was a PICC line – where the catheter is placed in your upper arm, and fed towards the heart. This has a large dressing placed over it, and needs changing every week. I wasn’t keen on this – I have a cocker spaniel puppy who spends his life jumping up for a cuddle, and I thought it would be impossible to keep to clean. Plus the weekly arm wax with the dressing change wasn’t appealing. The alternative is a tube that is placed in your neck. One option has an access site that dangles on top of the skin, with a dressing, and with the other, the line is tunnelled underneath the skin on the front of your chest, and a port is sutured under the skin. This is what I opted for – no dressings, easy to access and puppy-friendly.

The trouble was getting the port put in over the next 2 days before the chemo was due to start. And this is yet again where the kindness of the people we know overwhelmed me. The anaesthetist who puts them in agreed to come in on his day off (when he was meant to be working with the East Anglian Air Ambulance) and put it in first thing in the morning. I was given a slug of Midazolam, and was out for the count. When I woke up, I had a beautifully stitched port in place (and he could teach some surgeons a thing or two about neatly suturing skin), and then he gave me a lift home!

One final photo shoot
I wanted to do one crazy thing before the chemo started. We live in a very rural village, with fields just over the road. We took the dogs for a walk in the late evening, and when we had the land to ourselves, I went into the middle of the corn fields. With my back to my husband, I took off my top and we took some photos with my arms stretched up to the sky. It was wild and liberating and freeing – to be able to stick 2 fingers up to everything that was happening, and a final great shot of me with hair.