More tests + results

Firstly I’d like to thank everyone for all their messages of love and support. They mean so much to me at a time like this. They really do keep me going so please keep them coming. They are also a great distraction and allow my mind to stop racing so much. Thanks to those who have sent flowers and gifts also. And while I’ve got everyone’s attention I’d also like to thank everyone for their messages and gifts after Polly was born. I feel terrible that I haven’t yet sent written thank you cards with a lovely photo of Polly as a newborn. I will get around to it but maybe not in the near future. Here’s a photo of Polly only 7 days old.

Pretty Polly

The last few days have been extremely difficult for me. After playing the waiting game from Friday to Tuesday morning, I called again to chase up my results after lunch on Tuesday. I still had an appointment booked for further core biopsies at 2:30pm on Tuesday and I needed to find out if I had to make it up to Rocky for it. I was told that the Radiologist did want to do more tests before writing up the report from the MRI. So up we went again, Derek, Polly and I.

I had mammograms done on both breasts, just as a comparison (although the thought did cross my mind that if they started focusing in on the right breast I’d start to freak out a bit!). The Radiologist decided at that stage he didn’t need to do a further scan or core biopsies, he had enough information to finalise his report. Right breast is all clear, thank goodness.

Once again, the news wasn’t good. To go with my invasive breast cancer (which is approx 1cm), there is also a large area behind the 1cm tumour which is approx 6cm long from nipple running upwards. The Drs are confident that this is DCIS – ductal carcinoma in situ. DCIS is the name for abnormal changes in the cells in the milk ducts of the breast. ‘In situ’ means in place. DCIS is a non-invasive breast cancer. The abnormal cells are contained inside the milk ducts. Just so you know the difference, early breast cancer is invasive cancer that is contained in the breast and may or may not have spread to lymph nodes in the breast or armpit. Some cancer cells may have spread outside the breast and armpit area but cannot be detected.

Anyway, because of the size of the DCIS compared to my relatively small boobs, it has been recommended that I have a mastectomy rather than a lumpectomy (or breast conservation surgery). The Drs feel that if they do a lumpectomy my nipple will be pointing upwards instead of outwards and the chances of having to go back in for a mastectomy soon afterwards are pretty high. This is because when they do a lumpectomy, the pathology report needs to show clear margins on the tumour(s) they remove. Clear margins mean there can’t be any cancer cells on the outside of the tumour. If there aren’t clear margins, it’s straight back to surgery for a mastectomy. They can see from the MRI and mammogram that the DCIS area is quite large. I can actually feel the DCIS as well as the smaller tumour, and I know there is no way they could do conservation surgery and come out of it with anything that looked “normal”.

So I have decided to have the mastectomy and the decision certainly doesn’t come down to the cosmetic side of things. It’s because I’m shit scared of the cancer returning in the same breast. At one point I was even thinking take the other one too! There is a gene that can be tested for called the BRCA2 gene mutation. If someone has this gene then there is a 70% chance of cancer returning to the second breast and also a higher risk of ovarian cancer. I’ve been told the BRCA2 gene mutation test costs $1000s to be tested for and because I don’t have a strong family history it’s very unlikely I have the BRCA2 gene mutation. This is something I’m still considering being tested for though. Did you know that the chances of a woman developing breast cancer (in Australia) is 1 in 9? Another interesting stat is less than 5% of all breast cancers are caused by a family history. So it’s pretty obvious to me that most of the women who develop breast cancer over their lifetime do not have a family history. And here I was thinking that it was unlikely to ever happen to me because I don’t have a family history. If I knew this stat before I may have been more vigilant in keeping a close eye on my boobs! As scary as it is, it’s something to think about girls. How about you all do a self examination tonight and next time you’re at your Drs, ask them to do a check for you. People keep asking what they can do for me, please do this for me. At this stage I don’t know if they have caught mine early but obviously the earlier this horrible disease is caught, the better.

More information from my core biopsy last week is that the tumour they took a sample from is HER2 positive. This is good and bad. Bad because it’s a more aggressive form of cancer but good because they can now treat it with hormone therapy. I’ve been told that they consider most cases of breast cancer in women of my age to be aggressive. So, my cancer is hormone responsive and it most likely occurred during pregnancy when my hormones were going wild, estrogen in particular. The tumour is estrogen receptor positive. What worries me is that it started during my pregnancy with Rosie. What if it has been going on for this long? That’s a thought that would keep me awake at night if I wasn’t so tired…

At this stage surgery is booked for Monday 27 August. I have been extremely lucky to be able to talk to two amazing women over the last few days. One is an old touch football friend who has had breast cancer, a mastectomy, chemo, another mastectomy and more chemo plus a double reconstruction. It was scary talking to her about what’s ahead but also empowering at the same time as it helps me prepare myself mentally for what’s to come. One thing that will stick in the forefront of my mind is when she said, “Don’t fight the situation as it will just make it worse”. I think about giving birth to Rosie and Polly and how I didn’t fight the pain. I managed two labours with no drugs, not even gas. This is because I went into both with a mindset of not fighting the pain but working through it and knowing that I could do it. Mind over matter worked for me then and I’m sure I can make it work for me in my current situation.

The second woman I spoke to is a family member on Derek’s side who just happens to be a Gynaecological Oncologist (I think that’s right!). She has offered to look over my test results at each stage and also answer any questions I might have. She gave me a lot of information and once again I feel knowledge is power, even if it scares me at the moment. It’s like having a second opinion but even better ūüôā Both women have given it to me straight which I appreciate. No use pussy footing around.

Emotionally I have been up and down over the last week as I may have mentioned earlier this week. After the news on Tuesday I had a very down day on Wednesday. I’ve been to see my GP twice since receiving my diagnosis last Thursday and she has been fantastic. One thing she said today described exactly how I’ve been feeling. I’m like a duck floating along on the water, I might come across calm and strong on the surface but underneath I’m paddling like mad to stay a float. I have a feeling of anxiety that just won’t quit which is making it hard to eat (I know right! Not much suppresses my appetite.) I’ve already lost 2kg and I’m sure I’ll lose more, especially during treatment. This is obviously of concern because where is it going to come from?! Derek has also lost 4kg so the stress of the situation is affecting us all. Trying to wean Polly is stressful in itself, she’s not taking the bottle as easily as I thought she would. I have had offers of donor breast milk from friends and I am seriously considering it but I’m finding it hard to make a decision about that at the moment. This might be something to work out after my surgery. Polly had her 4 month needles today and hasn’t been herself this afternoon plus she’s still getting over her bronchiolitis so not exactly the best time to be weaning her from the boob and breast milk.

Rosie is probably doing the best out of all of us at the moment. She does seem to know something is happening but is getting on with things. She’s always been a little obsessed with my boobs so it will be hard explaining to her that there is something bad in my left boob so it has to be removed. Finding the right words is going to take some thinking. Any suggestions are welcome! I try not to use good/bad and like to use other words but that is often harder said than done.

Anyway, it’s late and I need my rest. I find if I go to bed exhausted, it’s easier to get to sleep and my mind doesn’t race as much. I’ve always been a night owl anyway, I doubt that will ever chance, no matter how much I’d love to be an early bird ūüėČ

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The Waiting Game

So I’m still playing the waiting game. A game I’m guessing we’ll need to get quite used to. When I hadn’t heard from the surgeon with results from the MRI yesterday afternoon I called his office. He’s only in his rooms Tuesday and Thursday and the receptionist told me they hadn’t received the report from the radiologist yet. I called CQMI to find out if the report had been done. Nope. The receptionist there was going to chase this up to be done for the surgeon by today. I’ll call CQMI again soon to see what’s happening at their end.

The practicalities of life are keeping me grounded at the moment. As are my girls. They still need looking after, and even though Derek and my mum are doing a fantastic job of doing most things around the house and for the girls, I’m also doing my bit. It feels good to be needed. Rosie’s gone off to daycare today after missing last week due to illness. She loves going and some normalcy for her is what I think she needs right now. She asked last night and today if daddy’s going to work. She knows something isn’t right as obviously he would normally be there right now. Derek never has sick days.

Derek left work on Thursday as soon as I told him the news. He’ll be taking off as long as is necessary and then may go back in a lesser role. He’s job has been pretty full on since taking it on in March last year. I think his work will be quite understanding about the situation but I know they do heavily rely on him so I’m guessing he’ll be missed while he’s not there. We need him here though and obviously we come first. Derek will be taking care of the financial and lots of the practical side of things. He’s strong my boy but I know he must be hurting like hell inside. It’s got to be hard for him to see me going through this and I hope his friends rally around him as he’ll be needing support and kindness as much as I will be. Maybe even a night out here and there to relief the stress of the situation.

It’s also got to be really hard on my mum. Mum’s been through cancer herself and lost a sister to cancer two years ago. What a horrid disease.

Polly’s much better today and we’ve started giving her expressed breast milk to get her used to bottles. I want to wait until she’s 100% before weaning her onto formula. She’s still got a cough and blocked nose. I’ve decided not to give her a bottle myself just yet. Just can’t bring myself to do it. Its nice to have our cheeky smiley Polly back. She’s so different to Rosie who was a very serious baby, hard to crack a smile from. She’s just what I need at a time like this. She really lightens the mood. Rosie is keeping us grounded too by being your typical self centered 3 year old. I don’t mean that in a bad way, it’s just the way it is and has been since soon after Polly’s arrival. If she’s not getting the attention she wants we all know about it! It will be hard to give her what she needs from me going forward. I expect that her behaviour in this manner will get worse before it gets better. There are going to be days when I’m not physically or emotionally capable of fulfilling her needs and that breaks my heart. I’m really unsure of what approach we should take if and when I do become sick from treatment or after surgery. Complete honesty? Can a 3 year old handle this? Or do we play it down? I think that would require more energy and I’m not sure I’ll have it in me. Which is better for her I wonder…

Anyway, still waiting and wondering. If you’d like to receive updates in your inbox just sign up to the top right of this page.

Love and kisses, Cas

Shocked…

What a week, the worst week of my life so far. On Thursday I found out that I have invasive breast cancer. Yep, the big, bad “C”. I wasn’t exactly shocked when I found out (even though that’s what I’ve called this post)¬†but I was devastated and nearly passed out upon hearing the news and relaying it to Derek.

A bit of background information:

In my third trimester with Polly I found two lumps on my left breast. I mentioned them to my OB and he sent me for a scan. I had the scan on 10 April and then had Polly on 11 April (2.5 weeks early). When Polly was 2 weeks old I then went back for a FNA (Fine Needle Aspiration) of the lumps so they could take some samples to test for anything abnormal. The pathology results came back as lactational changes and I was told to come back in 3 months for a follow up. I was really just going through the motions and was never concerned that it could be cancer. Breasts are lumpy during pregnancy and breastfeeding and I’d had a lump scanned when feeding Rosie that came back clear and eventually went away. I was not worried one little bit.

About 3 weeks ago I discovered a lump under my arm. I was due to go back to my GP for a follow up anyway and mentioned the lump under my arm at the same time. She referred me onto a surgeon who sent me for another scan and FNA on the new lump. This took place on Tuesday last week and I go into detail below. At this point I still wasn’t worried and the thought of cancer didn’t even cross my mind, again I was just going through the motions as it was the practical thing to do.

My week looked like this:

Monday:

Home with 2 sick girls. Calling Dr for results to a blood test I had last week to find out if I have an egg allergy. Nurse telling me Dr wants to discuss results with me in person. At this stage I was thinking this was the worst thing that could happen to me this week. I love eggs! I also booked girls in for Dr app on Wednesday.

Derek was away with work and Polly woke up overnight vomiting from coughing so much. She rarely vomits so it had me quite worried.

Tuesday:

Ultrasound and core biopsy on left breast and me thinking Polly could possibly have whopping cough (she doesn’t).

When I was in getting the scan done there was a moment when I realised that something wasn’t quite right. The radiographer’s demeanour towards me changed and there was a discussion with the radiologist about concerning breast tissue around the lump, not just the lump itself. They pretty much ignored the lump under my arm, except telling me it was a lymph node, and then decided to do a core biopsy on the larger of the original lumps (which is situated 12 o’clock, 6cm from my nipple with a smaller one 2cm below this lump). A core biopsy takes a larger sample than a FNA, which is what they did originally. Looking back I realise they would have a fair idea of what abnormal breast tissue would look like having done this many times over. I think they knew there was a problem then and there, even before the pathology results came back.

Polly’s cough was worsening and she was very tired from a big day of driving up to Rocky, waiting around with Armah (Derek’s mum) and driving back again.

Wednesday:

GP – Rosie: chest infection, antibiotics. Polly: Bronchiolitis (viral infection, lots of coughing and wheezing), watch and wait. Me: Egg white allergy/intolerance. Shit. Could this week get any worse! Back to GP on Friday to see how Polly’s doing.

Thursday:

Worst day of my life. Finding out I have breast cancer has been a surreal experience and to be honest I don’t think it’s quite hit home just yet the enormity of what’s to come. I’m trying hard not to look too far into the future because it’s just too overwhelming. That’s not to say that thoughts don’t pop into my head that aren’t welcome there, they do but at this stage I really have to try to focus on the here and now. Anyway, I digress.

On Thursday morning Rosie and I were lounging around in our PJs and Polly was back in bed. Rosie was playing Lego blocks with Playschool on in the background. We were building a house, having snacks and having some quality time while Polly was in bed. At 9:40am the home phone rang. I thought to myself it was either Mum or Sue as they’re normally the only ones who ring on the home phone. It was the surgeon who’d sent me for more tests (which I wasn’t expecting back until Friday or Monday). I can’t remember his exact words but he told me it wasn’t good news, he was sorry for telling me over the phone, but that it was breast cancer, what did Derek do and could we come in that afternoon. A feeling of absolute dread took over my whole body, I cried, he apologised again for telling me over the phone and I managed to get myself together for long enough to make an appointment for 2:45pm later that day. I hung up and immediately phoned Derek, my head was spinning and I thought I was going to pass out. I was having trouble standing, talking and breathing and poor Rosie was witness to it all. Derek left work immediately and called my sister in law, Jo who lives around the corner, to come sit with me until he got home. I called Mum and gave her the bad news whilst waiting for Jo to arrive. I did not want to be alone with my thoughts for one minute. Jo arrived, followed by Derek’s parents, followed by Derek himself.

There was a lot of crying that day. ¬†Lucky for me one of my oldest and closest friends, Rebecca, was in Yeppoon up from Canberra. ¬†Beck underwent a similar experience 4 years ago when her Drs discovered a brain tumour. ¬†4 years on Beck is going strong and will be fantastic support for me going forward (and has been already). ¬†Beck came with Derek and I to my surgeon’s appointment. ¬†It was great to have her there as she picked up things that went over our heads due to her history not just with her brain tumour but also in pathology. ¬† ¬†There was so much information to take in, it was very overwhelming. Information overload…

I won’t go into details of the conversation with the surgeon at this stage because we’re currently waiting on more results so that we can make decisions about where to go from here. ¬†The results we’re waiting on are from an MRI I had on Friday. ¬†I will be having surgery, that’s a given. ¬†The type of surgery will depend on the results from the MRI. ¬†What happens from there will depend on what they find during the surgery.

On Thursday evening my parents arrived and Derek’s mum Sue prepared a meal for 10 of us. ¬†I had lost my appetite during the day but it came back with a force that evening. ¬†Beck helped us relay all of the information to our families.

Friday:

I woke up feeling a bit better than I did the day before. ¬†Derek, Polly & I went to my GP for a check up for Polly and for me to have a chat with her. ¬†Polly was put on antibiotics as her Bronchiolitis had worsened. ¬†I was given a lot of information which I’m slowly making my way through. ¬†We were heading to the shops after the appointment when my surgeon called at 11:50am. ¬†He asked if we could get up to the Mater in Rocky by 1pm as the mobile MRI machine was headed out of town that afternoon. ¬†Before I knew it I was in a gorgeous blue gown that opens at the front and was told not to move whilst in the machine otherwise they’d have to do it again. ¬†I was face down with my boobs inserted into two holes, arms above my head, feet first into the machine. ¬†I was told to stay still for 45 minutes, which I did manage even though my arms went completely numb and I had restricted breathing room due to my positioning. ¬†I wouldn’t allow my mind to wander and I focused on my breathing and thinking about my beautiful girls during happier times.

Unfortunately I didn’t get the results on Friday afternoon even though the receptionist at CQMI thought that I might.

Saturday:

I had a pretty good day considering the circumstances. Just playing the waiting game at this stage. ¬†Things were surreally “normal”. Beck, Di and the kiddies came for a visit.

Sunday:

Went to bed late and we were up during the night with both girls. ¬†Polly’s cough seemed to be worsening and she was having trouble feeding. ¬†I woke up very fragile on Sunday morning and spent the morning in tears when I wasn’t sleeping. ¬†A good cry and sleep seemed to be what was needed after being in a bit of denial for the last couple of days. ¬†The afternoon was much better than the morning.

Today:

Waiting, waiting, waiting. ¬†Hoping to hear from my surgeon very soon with results from the MRI so we can move forward instead of living in limbo thinking the worst but hoping for the best. I woke up with the girls’ colds this morning. ¬†Yuk, last thing I need right now. ¬†Feel sick to my stomach with nerves and worry today. ¬†It’s bubbling up my chest and into my throat. ¬†I don’t think I’ve ever felt more sick with nerves and worry. ¬†Thinking about giving birth never made me feel like this.

While I wait on hearing what the next stage will be, I dwell on how and why this could happen to me. ¬†I’m 34 which means I’m in the 2% of women who get breast cancer in Australia (20-34 year olds). ¬†I have no known family history (it’s normally maternal). ¬†I’ve had babies and have breastfeed, both of which is meant to reduce the risk of breast cancer. ¬†I live a relatively healthy lifestyle and don’t eat a lot of refined, processed foods or foods high in sugar. ¬†It’s less of the why is this happening to me, more the how did it happen?!

The thing that upsets me the most at this stage is not having the cancer itself but how having it affects my role as a parent and my ideals as a mother. ¬†I absolutely love breastfeeding. ¬†If you know me well, you know this. ¬†I’m not one of those breastfeeding mothers who thinks everyone should breastfeed as I know everyone has different circumstances but for me personally, it is absolutely devastating that I’m going to have to wean Polly when she is only 4 months old. ¬†If this happened a year down the track, I would still be very upset at the situation but less so than now as Polly would be older and closer to being weaned anyway. ¬†I fed Rosie until she was 16 months old and had planned on feeding Polly for at least 1 year and seeing what happened from there. ¬†Being forced to have to stop doing something I love so much as a mother breaks my heart. ¬†I was hoping there could be a way to continue on with feeding from my good breast after the surgery and even possibly after treatment by pumping and dumping every day but it looks like it won’t be possible as it’s most likely that I’ll be on hormone therapy for some time after surgery.

In some ways it’s a good thing Polly is so young as she’ll adjust to changes easier than if she were older. ¬†Poor Rosie saw me during my darkest moment, something which I hope she doesn’t remember when she’s older. ¬†Rosie’s developmental stages are spread out now but Polly’s are much closer together and I’m worried I’ll miss out on some of them over the next year or at least not be able to enjoy them as I would have. ¬†Rosie is at an age where she needs routine, which may be difficult going forward. ¬†On the up side, Polly rolled over today!

Plenty of if onlys, buts and whys. I know I’ll need to be super strong to get through this and I know I’m capable of it, I just hope that my body can handle it.

I’ll sign off for now and will be back with more information once we have it and have made the next lot of decisions. ¬†Feel free to leave comments under this post or over on the Guestbook page of the blog. ¬†I’d love to hear from you.