A breast cancer story – Listening to your body (part 2)

So you may have noticed in recent months my activity here on my yoga blog and my YouTube channel has been absent.  The reason for this was I had to focus my energies entirely on getting well. This may come as a surprise for those I have not confided in but suddenly and very quickly in October 2016 I was diagnosed with breast cancer. It is only now that my treatment is more or less over that I feel I am able to fully share my experience.

What follows here is a record of the events that lead up to that diagnosis and what happened to me afterwards. I had no family history of breast cancer and no symptoms. It was caught by complete chance because I believed something wasn’t “quite right”. I was extremely fortunate.  My treatment was short and I have an extremely good prognosis for the future. However for those few months my life and the choices I had to make were brutal. So if this account can prevent or help someone going through what I have experienced then something very positive will have come out it.

Breast pain is normal, right?

Things started to change in the summer of 2016.

In recent years my breast pain prior to my menstrual period had been increasing. I hadn’t really paid it much attention as we girls all get sore boobs around that time of the month right? It’s also been said to me many a time that breast cancer isn’t painful. However I started to get pain around the time I ovulated too and this was a different kind of pain altogether. This time I took note.

26th July 2016 – Severe stabbing pain in right breast wakes me up in the middle of the night.

22nd September 2016 – Stabbing pain again. It feels like being stabbed by a small needle repeatedly. It goes on all day.

I feel in my bones this isn’t normal but am I being paranoid? My BFF’s Mum is right in the middle of her breast cancer treatment. We’d had a lot of conversations about our breasts as a consequence. I book an appointment at my local surgery. Let’s get this looked into.

26th September 2016 – Breast exam with my GP. I nearly chicken out. I arrive early and he’s running late. I wait an hour to be seen. My GP isn’t overly concerned and during an examination can find nothing suspicious but he does refer me to Breast Clinic as a precaution.

1st October 2016 – Stabbing pain again in the middle of night starts approx 2am finally eases off about 6pm. This time it’s probably the worst pain I have ever experienced in my life and I’ve had some painful events in my life. The pain it’s worse than when I fractured my shin bone. It feels like someone stabbing my breast with a red hot poker. No kind of painkiller I take works, not even a little bit. I resort to stuffing an ice pack down my bra, this is painful too but it’s a pain I can just about bear.

To breast clinic and beyond

6th October 2016 – Appointment at Breast clinic. The consultant dismisses the pain I have been having as muscular but he does find a lump. I’m amazed as I’ve never felt this lump in my routine checks.

Swiftly I’m moved through the process: first is a mammogram. This is not as bad as I feared however the results prove to be very unhelpful because I have dense breasts. Dense breasts are a thing apparently? The radiographer explains that the X-rays are all cloudy and reveal very little.

So next is an ultrasound. I’m still relatively calm at this stage but then the radiographer says he’s found some a-typical cysts, he’s going to take some biopsies and insert a small metal marker so we can tell where tissue was taken from in the future. I begin to get a bit tense now. I wish with all my heart I hadn’t come alone. I ask if the markers are strictly necessary as I really don’t want to have any metal in me. He assures me they are totally inert and it’s very routine. So we go ahead with the biopsies in the lower right breast and lymph node in arm pit. Thankfully he’s very quick. Brutal but quick.

Next follows another mammogram to check the placement of the metal marker and I meet with the consultant again. This time the student nurse is gone and I’m introduced to what will be my Macmillan nurse. I am in utter utter shock. Slowly and very kindly the next steps are explained to me. I am reassured that the lump is small and it might be also be harmless. I am to wait a week to find out the results. The longest week of my life. Mercifully my line manager at work allows me to work from home during this week. I embark on a series on very long walks to overcome the anxiety and panic attacks I start to have.



14th October 2016 – The week has passed and I return to clinic and this time I’ve brought my husband (aka Hubby). After what seems like the longest wait in the world we are called in.

The consultant starts off. “Yes, it is what we thought…”

I’m thinking “Great, I’m fine!”… but no, it is cancer. I take in very little of what happens next.

From the biopsy they find an invasive ductal carcinoma. The lymph node biopsy turns out to be benign which is good news but they ultrasound scan it again to double check. After the scan they determine that it’s the same size as the lymph node in my left armpit so no further action is thought required. So what is next? My consultant wants to know if there are any others area of concern in the breast and as the mammograms taken a week ago weren’t massively helpful my consultant orders an MRI.

25th October 2016 – MRI Scan of breasts. I am asked to lay on my tummy and place my breasts inside these two square holes. More prodding and squishing until the positioning is just right. I’m injected with a some fluid that will help show up on the scan and I lay in a noisy tube for 40 minutes. So very loud! A bit like listening to some industrial German techno music actually.

31 October 2016 – I’m called in to breast clinic for a quick ultrasound again after the results of the MRI. “It’s to check sizing” the nurse says over the phone but before I know it I’m having two more biopsies in my right breast.

Rule 1: never go to breast clinic alone.

You never know what might happen. I’m mightily relieved a very close friend on hearing I was going to clinic on my own today refused to let this happen and came with me.


1 November 2016 – my Macmillan nurse calls to see how I am after the surprise biopsies but she does have something to tell me. I’m HER2 Negative! Finally some good news. This means I can definitively avoid some treatment.

8 November 2016 – so back to clinic to get the results from the latest round on biopsies. These are classed as B4 suspicious cells. They might be cancer and they might not, but they probably will turn into cancer in 5 – 10 years. So the biopsy is repeated to see if we get some more useful cells for testing. I’m feeling very much like a human pin cushion. I’m black and blue and I don’t feel any closer to knowing what is going to happen to me. It’s all getting a bit too much to deal with and I’m an emotional wreck. My Macmillan nurse organises an appointment for me with my GP.


11 November 2016 – GP appointment – Signed off work. It’s a massive relief and in hindsight I should’ve stopped work a lot earlier.

Rule 2: Don’t let financial worries get in the way. You will manage.

15 November 2016 – Back to clinic for the results from new biopsies but they are showing the same as last time. The radiologists suspect that they actually may be B5a which means highly suspicious and will turn into cancer soon. I am given two surgery options:

1 – sentinel lymph node biopsy followed by mastectomy and reconstruction at a later date.

2 – sentinel lymph node biopsy, lumpectomy of cancer and also to remove an area of tissue from the lower part of the breast to do further tests on to determine if it is cancer or not.

I chose option 1. I need this to be over. All the evidence and experience from the team at the breast clinic is pointing to the fact there is more than one area that is cancerous. It’s an incredibly hard decision but I know in my heart it’s the correct one.

Then it’s all systems go. More leaflets and a consent form. I actually begin to feel much better.

Surgery time

25 November 2016 – Pre-op appointment. Blood pressure, height, weight, MRSI swabs, bloods and urine.

29 November 2016 – Oops we forgot the chest X-ray at the pre-op appointment! What follows is mad crazy dash to the hospital as I can’t have my surgery tomorrow without it.

Whilst I’m at the hospital I also have an isotope injection into my breast. There is a department at the hospital called “nuclear medicine”. This is a little disturbing but it’s needed so they can find the “sentinel” lymph node in tomorrows operation. The “sentinel” node is basically the first one fluid drains to from the breast. If there’s cancer here it means it’s spread.

30 November 2016 – Sentinel Lymph Node Biopsy. Arrived at 8am.

Paracetamol & anti-sickness drugs before op and compression stockings go on. General anaesthetic given at 9:30am. I’d been warned after the operation I may look a bit like a Smurf because they inject blue dye into the breast. This is to also help locate the “sentinel” lymph node. Yet they decide not to as they fear I might be allergic to it. I’m allergic to a lot of things. Awoke after op at 11:30am. Morphine taken at 11:50am. Toast and coffee at 12:30am. Hubby arrives at 3:45pm to collect me. A little unsteady on feet and woozy but on the whole I don’t feel too bad.

5 December – I visit clinic to discuss mastectomy and reconstruction surgery options and view before/after photos of patients who have had this kind of surgery. I had been dreading this but the pictures actually look really good.

8 December 2016 – Impromptu visit clinic to have my seroma in armpit drained. If your familiar with the 1979 hit song “My Sharona” I can’t get this song out of my head except to me it’s “My Seroma!” I may be going slightly mad.

The seroma is most uncomfortable and it feels like I’m hiding a satsuma in my armpit or trying to grow a 3rd breast. I mention this to my consultant about the growing of a 3rd breast and he says this would just be greedy. About 30ml of fluid is drained. The seroma is just a complication of having some lymph nodes removed and I’m told it will resolve itself naturally. I don’t seem to have any other side effects however the lower part of my shoulder blade has gone completely numb. This is because during the operation they had to move a nerve out of the way to remove the lymph nodes. I’m told the feeling should come back.

The best news of the day is though the results of the lymph nodes also revealed. Totally clear! No cancer! Yes yes yes. No one can wipe the smile from my face. This is great news as it means when I have my mastectomy I’ll be able to have my reconstruction done at the same time.

9 December 2016 – I have “My Seroma” drained again it’s only about 15ml this time and I’m advised not to have it drained again as it may introduce infection. The consent form for mastectomy and immediate reconstruction with implant is signed and we can move onto the next stage. Also had photos taken of my breasts. Numerous angles, a bit like a criminals mugshot. Someone someday will be looking at my before and after boob photos. I know how much they helped me and it’s makes me feel better.

16 December 2016 – Boob Voyage day and Boob 2.0 day! Mastectomy and immediate reconstruction today. Finally goodbye cancer!

Arrive at 8am. All the usual pre-op stuff done. Paracetamol and anti-coagulant injection. Blood pressure taken and stockings on. My latex allergy is mentioned a lot! So much so I’m first on the list, brilliant. Some ladies need to wait around practically all day. I’m taken down to theatre about 9am. Lots of yogic breathing to try and remain calm but I don’t feel too bad. I just want it over. The cannula goes in, oxygen mask goes on and that’s all I can remember till 2:30pm. I wake incredibly thirsty but I’m not in any pain. It takes ages for the ward to come get me so I have a little morphine and doze a bit. I finally get to the ward at about 4pm. I ring Hubby and get him to visit. In the meantime the sports bra is on. This will soon to be otherwise known as the “implement of torture”. I will need to wear this 24/7 for the next six weeks. I also get my first peek at the reconstruction.  Boob 2.0 looks like it’s going to be good! I joked with my consultant in the morning before surgery and asked if he had gone to art college at all because I hoped he was good at sculpture. I said he hadn’t but by the looks of this “damn, he is good at sculpture!”

Back on the ward it is ridiculously hot. Mum and Hubby arrive and my BFF also drops in to say hi. I’m very pale but feel alright. I’m just beginning to feel very sore where two drains come out of my chest. The bottles at the end are huge! Like the size of milk bottles. These are going to be a total pain but they put them in bags so I can sling them over my shoulder when I need to have a wander. Hubby and Mum go home just before 7pm, they look exhausted. I’m in a good mood and distract myself with some trashy Netflix. Only later does it get difficult and by 4am I’m quite distressed having had no sleep at all due to a very busy ward and me not really realising I was in pain.

Rule 3: Don’t wait till you are in pain to request the drugs!

Anyway it’s back under control fairly easily after I complain a bit and I may even have fallen asleep. Well that is until my neighbour in the next bed decides to ring her Mum at 5.55am. Great! I think. I’m awake again. I go for a wee and whinge about my noisy neighbour to the nurses. We all tut. Anyway back to bed. More drugs arrive and everything seems ok for a bit as all the ward has a snooze. It’s the quietist it’s been! My consultant appears about 10:30am. He’s so lovely and smiley I immediately feel at ease. One of my drains has malfunctioned so we replace that. I start quizzing the nurses about my discharge home. There’s no way I’m having another night in this noisy oven. Anyway Mum and Hubby arrive about 2pm but it’s another two hours before all my drugs arrive so I can go home. It does happen though and I’m delighted! We walk very gingerly out to the car and go home.

Recovery


20th December 2016 – Five days after surgery and into the breast clinic to check everything is as it should be. It’s my first time to see my wound nurse. She’s absolutely lovely and admires my reconstruction. “Wonderful symmetry” she remarks and “immaculate”.  This is just what a girl needs to hear. My drain bottle marked “inside” is replaced but it’s not that full.


22nd December 2016 – into the breast clinic to be checked again. This time the “outside” drain is removed. Hallelujah. One drain will be much more manageable as it’s proving incredibly difficult to sleep. I wake every 4hrs in the dot.

28th December 2016 – into clinic to have the bottle changed. At 300ml it’s getting heavy. 50ml is still draining per day and it needs to be 30ml or under to be removed. We give it a few more days. I’m desperate to have it removed.


30th December 2016 – Two weeks after surgery the final drain and bottle is removed. I can finally shower! Yay! Just in time for new year. My wound nurse warns me not to go crazy. “You’ve made it look easy but remember you’ve had major surgery!” she says.

3rd January 2017 – a new year and back to clinic to check the wound. All looks ok. I ask lots of questions about the implant. Will it feel better, why is it so tight. I’m told it’s all very normal and very early. It will take at least three months for it to feel normal.

Results day

10th January 2017 – it’s results day and I’m terrified. We go to clinic to see my consultant and he’s delighted. “Mastectomy was good decision!” – He says. As it turns out the lower part of my breast also had a “field” of tiny invasive cancers in addition to the invasive cancer and DCIS we already knew about. I feel like I’ve dodged a bullet and I am somewhat stunned.

So what’s next? My consultant says it’s not clear whether chemotherapy will be beneficial or not. So they’ve sent my tumour off to America for an Oncotype DX test. This is very specific genome testing that will give us a recurrence value. Results will be in two to three weeks. More waiting then, I’m not sure I’ll ever get used to this waiting. They ask “before you leave can you please visit the photo dept we need more photos of those breasts”. It’s a small annoyance but I do feel like the end of all this is finally in sight, thats “if” I can avoid the chemo.

Tonight I sleep through the entire night without waking once for a very long time indeed. In the next few days I begin to feel more normal and the implant doesn’t feel as uncomfortable.

27th January 2017 – The phone rings. This is the call I’ve been waiting for. I’m nervous. It’s my Macmillan breast care nurse and the results of the oncoType DX are in and hallelujah the news is good. The recurrence score is very low and the benefits of chemotherapy are not significant enough to warrant going through it. I don’t need Chemo. I swear and I cry. This has been the thing I’ve been most scared of throughout this whole process. The word “Chemo” pushed a lot of buttons for me personally because almost 10 years to the day my father passed away from complications caused by his first cycle of chemotherapy for his Oesophageal cancer.

I call Hubby, my Mum and all my friends. I book a much needed haircut as I’ve not had one since this whole nonsense started. There seemed no point if it was all going to fall out.

The evening is spent in the pub with my closest friends. I feel normal for the first time in months.

31st January 2017 – the final clinic appointment. I’ve made it. I’m the other side of the mountain. All there is to do now it have a quick chat about what’s next.

It’s now time to start my hormone therapy. As my cancer really loved all my girly oestrogen hormones I’m to take some drugs to lower the level to help reduce my chance of the cancer recurring.  My consultant says it will be for the next five years possibly ten. Hot flushes may follow but you know considering what I’ve been through I’m just very thankful to be alive. I have a long chat with my Macmillan breast care nurse as much for reassurance then anything else. She has been truly amazing during this process. There was never a stupid question and she always gave me all the time I needed. Then that’s all there is. I’m to be seen again in three months to check the implant is behaving and again every year for mammograms on my remaining breast.

And the rest is history

For now it’s more or less over. Yet I’m under no illusions. Even though my recurrence score is very low I live with the thought that the cancer may come back. I’m reassured by the fact I’m going to be kept a very close eye on for basically the rest of my life. I know what to look out for and I wouldn’t hesitate for a moment to have a second mastectomy if I needed it. The hardest battle may still be ahead. How do to adjust to my normal life again? But if this whole nonsense has taught me anything it’s to just take one step at a time, don’t get ahead of yourself and only be concerned with the facts you know.

Rule 4: Don’t waste time, energy or tears on the “what if’s”.

Huge thanks need to go:

My dear husband.

He has proved himself to be much more than the man I thought I’d married. Who I thought was pretty fantastic even then but now he is my hero. I couldn’t have got through this without him. I can’t list everything he did as the list is enormous.

My Mum.

Always there and reassuring when I needed it. Who washed and clothed me those first few days after surgery when I couldn’t do a thing.

My BFF.

Simply an incredible women. Listened to three months of my non-stop whinging. Provided me with much needed distraction by emailing me everyday while I was going stir crazy at home.

My BFFs Mum.

Without whom I would never had visited my GP about my random breast pain.

And there are many more. My friends, my yoga buddies, my colleagues and the amazing NHS.

Thank you all.

2 thoughts on “A breast cancer story – Listening to your body (part 2)

  1. Not an experience I would ever have wished for you, happy that you have come through safely and coped so well. Sharing your story like this is a brave thing to do but it will help so many other people and there is no better thing one person can do for another. Here’s to a healthy and happy future for us all xxx

  2. You’re so brave sharing your story Heidi, you’ve been through so much and I really wish you the best for the future. I look forward to seeing you back at work!

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