This was sent via email to all my friends and family 2 weeks after my diagnosis on Monday 24th of June 2013.
Hello wonderful people in my life,
I hope this finds you well. Unfortunately I have some sad news to share…..
This is not an email that I ever thought I would have to write. I hope that I never ever receive one.
To those of you I have spoken to thank you for all your love, kind words, never ending support and advice.
To those of you that I have tried to contact without success and those who have heard through the grapevine, apologies.
Two weeks ago today I was informed that I have Breast Cancer.
As you can all imagine, I was both shocked and extremely guttered and I felt like I had just had my heart ripped out of my chest when a specialist I had only met the week previous sat down with me in a hospital room and broke the news to me.
I have repeated the same story over and over in the past two weeks and to those of you who have listened thank you for taking this weight off my shoulders it has helped me get through. Talking about it has been the best thing to understand it, deal with it, and be positive about the future.
From the beginning…
About a month and a half ago before my last period my breasts were unusually hard and lumpy. They were so hard that I found it painful. I am not one to get period pain or much breast tenderness so I knew something was amiss.
It was my left breast.
I had to get registered with a doctor so I made the appointment to see a nurse to get registered – which was two weeks later. A month ago today – Friday 24th May.
A doctor was avaliable to examine me and commented that there was lumpiness in both breasts but she said that she could defiantly feel a harder lump in the left breast. She said “It could be nothing but we refer as many people as we can, because if it is something suspicious the NHS can get into a lot of trouble if we don’t act”. She told me not to worry and that she would refer me onto a specialist and that a the hospital would contact me within two weeks to make an appointment. I got a call for an appointment the following Thursday (30th May) while I was in Vienna, Austria. First appointment with a specialist was the following Monday morning (3rd June).
The appointment was at Whittington Hospital which is only 20 minutes away from where I am staying currently on the overground to Upper Holloway. Archway is the closest tube station to Whittington for those of you who know London.
The consultant I saw was Dr Patkar. I had an examination where both breasts where checked and he noted that in my left breast there was a lump between 2 and 3’o clock to give you an indication of placement. It is quite close to the center of my breast so just beside the nipple and feels almost like a knot of tissue or soft gristle.
I was referred to the imaging department for a ultrasound and if the lump looked suspicious or unreadable then I would have a biopsy. Dr Crooks the consulting radiologist did a scan of both breasts and showed me what was hiding in my left breast. Breast tissue is normally very dense so anything out of the ordinary shows it self pretty well in a scan. The image she showed me looked like a sea of grey matter full of speckly bits. Right smack bang in the middle of it was a big black spot which to me now that I think about it resembles a squash ball. She said don’t be alarmed it looks big but its around the size of your thumb nail. Due to the fact the lump was so dark I had to have a needle biopsy then and there. I had local anesthetic so I couldn’t feel a thing which was big because the needle was MASSIVE. They extracted a couple of bits of tissue to be tested. I was a bit sore for a couple of days and the bruising was pretty epic but it was fine.
I had to wait a week for results. Life as normal.
Monday 10th June. Another day off and an anxious feeling. I was sitting in the waiting room for ages. Then I got called in. In the room was a student nurse, Dr Patkar and a Senior Breast Clinical Specialist Nurse, Vivienne – who is originally from Auckland. I sat down and before I knew it I was in tears. “The results have come back showing that it the lump is defiantly cancer”. I think at that moment I could’nt hear anything It was like loud sirens or screaming going off in my head. That’s what I feel when I tell someone the news. It’s an awful feeling. I had Dr Patkar with his hand on my knee and Vivienne comforting me – so this made me feel like I was with very good people. To have a fellow Kiwi as my contact to the surgical team is just awesome. I was told that my age, fitness and healthy lifestyle are in my favour and that because I had listened to my body I had caught it early.
The classification of the cancer was Grade 3 / Stage 1 (Under 2cm) the actual size of the lump was approx 1.7cm (17mm).
A raft of questions came spilling out of my mouth: Will I still be able to have children? Can I have the lump removed? Am I going to have my breasts removed? How bad is it? Have I caught it early? Am I going to have to have treatment?. I can’t really remember exactly what was said but I just felt like I had been thrown under a train.
Yes we can refer you to a fertility specialist, Yes we want to remove the lump as soon as next week and will not have to remove your breast, Yes you have caught it early, Unfortunately yes you will more than likely have to have treatment – Chemotherapy and Radiation.
I was referred upstairs for a mammogram where Dr Crooks came and saw me after the scans had been looked at. She knelt down before me grabbed my hand and said “We have got this”. She informed me that the mammogram had taken a good set of images and that there would be no need to do an MRI. I went back down to see Vivienne who spoke to me about all the things we had discussed in my results consultation, what the course of action could be, fertility and treatment. I went home with a bag full of books and leaflets on “Breast Cancer”.
I cried a bit that afternoon. I did a lot of reading, then i’d cry, then I would read some more.
I got a phone call two days later and had to go for an MRI. Dr Patkar told me over the phone that the lump was bigger than they originally thought and that they wanted to get more information to check the size and to see if the cancer had moved into my lymph nodes. MRI was the following day (Thursday 13th July). That was an interesting, clunky, loud experience. I would compare it to a mixture of the worlds most annoying truck reversing noises that goes on for 20 minutes!
Another results day (Monday 17th) Kate accompanied me. So, there is good news. The MRI has shown that the cancer has not spread beyond the breast although we will still want to do a Sentinel Node Biopsy to remove some of the lymph nodes just to double check that they are clear of infected tissue. The not so great news as we thought after having a closer look at the mammogram and why we decided to go ahead with the MRI in the end is that the lump is 3cm (30mm). So the Stage had changed up a level to 2A.
So, I was due to have the lump removed on the Thursday (20th May) but due to the fact the lump was a lot bigger than first thought the plan of action has changed.
In the next 4 to 6 weeks I will go through fertility treatment and get my eggs banked. I have an appointment tomorrow so currently don’t have much info. I have to do this before starting any treatment. Even though statistically for my age there is a good chance that I will still be able to conceive after chemotherapy and radiation, I do not want to take the risk that I may not be able to have children, be unable to conceive naturally or go through early menopause which are all side effects associated with chemotherapy. I have read that women who are treated for cancer under the age of 30 have the best chance of becoming pregnant after treatment. It does however depend on the mixture of chemo drugs and how your body reacts. The optimist in me says I want 15 boys. All Blacks squad in 20 years….
If they were to remove the lump as it is the would have to cut out around 1 to 1.5cm of tissue surrounding the 3cm area. That is between 4 and 4.5cm of tissue. That is a big amount of tissue to remove and I would be left with a massive dent in my breast. Instead of removing the lump they want to shrink it with Chemotherapy first. What they will do hopefully at the same time that they take out a couple of lymph nodes to test is they will use the needle biopsy technique to insert a small plastic “clip” into the lump. This acts as a marker to show the placement of the lump / cancer as in most cases when a lump is treated with chemo it shirks down smaller and in some cases shrinks to nothing. The plan is to go in after the lump is smaller and remove the tissue surrounding the “clip” and a lot less than would be removed than if they had to take it out now.
I asked about other options and no matter what I asked all of them still came with Chemotherapy.
So if I had the lump removed I’d still have to it. If I wanted the breast removed with the intention of getting an implant then I would have to have a mastectomy and wait for approximately 9 months – to go through Chemo, Radiation and for my body to be well enough to heal after a reconstruction. The implant would react with Radiation so that’s a no go. Don’t really want no boob for that long.
We had to ask the hard questions too.
Is it going to be feasible for me to stay in London, am I going to be able to work? Because financially it would be impossible to not work here as I have not right to benefits although everything is covered under the NHS. Would you recommend I stay or leave? They said that people who go through Chemo are generally able to work throughout the treatment. Chemo only occurs once every three weeks and I would have to have between 6 to 8 cycles so it would last 5 to 6 months. They said that with work generally they could get me in for treatment on a Friday afternoon I would have to rest for the weekend and should be right by Monday to be back at work. I still need to speak to the school where I have been offered an amazing opportunity to teach Art starting in September but I feel that they will be understanding. Fingers crossed.
A few people have asked me if I am going to go back to New Zealand.
The answer at this stage is no. I have discussed this with Mum and we both agree that it makes sense to stay here. I am so close to the hospital with highly experienced doctors and surgeons, the research and development for breast cancer treatment are advanced here and there are breast cancer specific drugs that are avaliable at no cost. Many of which are not government funded in New Zealand – the main one being Herceptin. Considering that this has all happened in the last month and I feel like the health system here is very fast moving and efficient it is evident I am in the best possible place to be treated. I also feel settled here, have a great support network of friends and still want to work and travel if I am able to.
So the next month will be interesting.
Hormone injections, eggs banked, lymphnode biopsy, clip inserted into the lump……..
The plan is to hopefully start Chemo at the end of July, beginning of August.
I’m hoping that I may be able to sneak in a trip to Turkey but at this stage Summer is pretty much a write off…..it’s all a game of wait and see and things could change. The sooner I get my eggs frozen the quicker I can get this process started and get it done. I have been advised that “Lumpy” will stay put and should’nt move or grow before treatment.
This is all the information that I have, any questions or concerns you have for me please get in touch. Obviously I am not broadcasting this to the world so emails, texts, private facebook and phone calls are what I need to keep me going. Keep the positive vibes and prayers coming too! Any knowledge and information you have on this little problem I have please share it I want to know everything.
Please try not to worry. I am feeling well and I am in a happy space at the moment despite the shock of all this. It is an odd surreal feeling and I sometimes feel like I am almost in a dream, because of the pace in which it has happened. I have an incredible group of friends here in London that are looking after me and the support networks in New Zealand are keeping me going. The most important thing for me to come out the other side is to stay positive and get as many positive thoughts and vibes from all of you.
A special mention must go out to Kate, Heather, Haley, Dani and Clint….I would not have got through the last two weeks without you. Your friendship means the world to me. I love you all.
All in all I am treating this as a learning experience so please all of your do regular checks (Men can get breast cancer too!) and if you are unsure about something get to a doctor immediately.
I’m going to fight this and I am going to beat it……Just as well I like a challenge!
Until the next update, love and hugs…..