Menopause, schmenopause...

I had an appointment to see my oncologist on Tuesday to discuss hormone treatment. Because my cancer was oestrogen receptive (basically oestrogen made the bugger grow) they can give me medication to try and prevent a recurrence. I use the word try as there are no guarantees that it will work, but fingers crossed hey?

My surgeon put me on Tamoxifen when I went to get the results of my surgery three weeks ago. Tamoxifen is an anti oestrogen drug which tends to be the standard drug of choice for oestrogen receptive breast cancers. Tamoxifen is a mystical drug - it  works in a way that’s quite complicated and not yet even yet fully understood by medical bods.

Oestrogen positive breast cancer cells have proteins called receptors. When oestrogen comes into contact with the receptors, it fits into them and stimulates the cancer cells to divide so that the tumour grows. Tamoxifen fits into the oestrogen receptor and blocks oestrogen from reaching the cancer cells. This means the cancer either grows more slowly or stops growing altogether. Theoretically.

However, I don't want any oestrogen floating round my body - as little as possible anyway. So i asked to see my oncologist abut ovarian suppression or the 'shutting down' of my ovaries. Little bastards...

To cut a (relatively) long story short, my hormone treatment has been changed to one that is deemed to be stronger than tamoxifen. Studies have shown it to be more effective in preventing recurrence and because I am classed as 'high risk' for recurrence (I really wish oncologists would learn to temper their language sometimes!) it would be of greater benefit to me. Such is my disordered brain at the moment, even though I made the appointment to see the oncologist and I left with the drug combination I wanted, I then panic about the fact that they gave it me and think I need it. Sigh.

The treatment involves a monthly injection of a hormone implant called Zoladex and a daily tablet called Exemestane. Zoladex works by stopping the production of luteinising hormone by the pituitary gland, which in turn leads to a reduction in oestrogen produced by the ovaries. I've essentially been put in to a chemically induced menopause which comes with side effects such as hot flushes, mood changes and weight gain. I'm also now at risk of osteoporosis and can lose up to 12% of my bone density per year.

Exemestane is a member of the drug family called aromatase inhibitors. In women who have gone through the menopause the main source of oestrogen is through the conversion of androgens (sex hormones produced by the adrenal glands) into oestrogens. This is carried out by an enzyme called aromatase. The conversion process is known as aromatisation, and it happens mainly in fat. Exemestane blocks the aromatisation process and reduces the amount of oestrogen in the body.

It isn't given on its own to pre-menopausal women (like me) but because I have now been put in to a menopausal state it is the most effective drug to use.

Zolodex is given by injection in to the stomach. This is the needle they use:

I shit you not.

I was brave. No numbing cream. It hurt. Really hurt.

I'll probably be on this combination for about five years (lets hope I live that long). If I have one every month that is 60 of those beauties in my stomach. But to be honest, if it helps to keep the cancer at bay I'd gladly stick it my eye, never mind my stomach.

So here comes the menopause - I'm already having hot flushes that are such that I want to rip my wig off in public places and stick my head in a freezer. I'll be moaning about how things were not the same as when I was a lass and having a blue rinse next. If I had any hair that is.......

The results are in......

A quick update about the results of my surgery...

I went to the hospital on Friday to get the results from my mastectomy and node clearance. I sat in the waiting room with a touch of PTSD and a lot of a hangover (more about this in a later post) getting increasingly more nervous. Eventually the surgeon called me in and in the 30 seconds that it took me to sit down and for him to speak, I had once again imagined the worst possible scenario. I'm getting good at that.

Anyway, here it is in a nutshell:

The tumour measured 20mm and there was no more cancer in any of the nodes - so only one node with cancer in overall. 

I also had intermediate grade DCIS. DCIS stands for Ductal Carcinoma in Situ which means that its a kind of pre-cancer - it's cancer that hasn't yet developed the ability to spread outside the ducts and so is not classed as invasive. It is apparently quite common to find DCIS as well as invasive cancer. 

The cancer is grade 2 which is middle of the road as far as aggressiveness goes.
There are three grades of invasive breast cancer:

• grade 1 (well differentiated) the cancer cells look most like normal cells – for example, they are of similar size and shape to normal cells – and are usually slow-growing
• grade 2 (moderately differentiated) the cancer cells look less like normal cells – they are often larger and show variation in size and shape – and are growing faster
• grade 3 (poorly differentiated) the cancer cells look most changed and are usually fast-growing.

Grade is different to stage. The stage of my cancer, according to my histology report is stage 2A.

Very good margins around the tumour which were all negative (basically no cancer cells found in the tissue around the tumour).
 
No vascular invasion  - vascular invasion is when the cancer breaks through the walls of the blood vessels in the breast and it increases the chance of the cancer spreading to other areas of the body.

The tumour is 8/8 oestrogen receptive which is the highest it can be - we knew this from the biopsy but they retest these once the tumour has been taken out.

Still awaiting the HER2 result - this was negative from the biopsy and this is apparently very unlikely to change, however it still does need to be retested.

There was lots of other bits and pieces on there but the above are basically the important bits! The main thing that concerns me is that the tumour that was taken out was still all made up of invasive cancer however none of the medical professionals I've spoken to seem to share my concerns!

So what happens now? 

Throughout the whole treatment process I've been told that I will need radiotherapy however due to the fact that there was only one node overall involved and the margins were large and clear, the surgeon has told me that this is now up for discussion. I'm not sure how I feel about this. On the one hand, I feel like my body has been through so much that that if I am told radiotherapy will have very little benefit, I'm inclined to not put myself through it. Although nowhere near as bad as chemotherapy, it does bring with it its own side effects, including skin damage, possible lymphoedema and damage to my reconstruction. However, I also feel like I want to have everything they can possibly throw at me. None of it is foolproof, but at least I will know that i have undergone all treatment possible. 

The surgeon has started me on a hormone therapy called Tamoxifen, which I will need to take for five years, perhaps ten. However, I'm being referred back to my oncologist to discuss ovarian suppression as well  - this is basically the shutting down of the ovaries with a drug called Zolodex with the aim of reducing the amount of oestrogen being produced. However, it does bring with it more side effects, including hot flushes, weight gain, osteoporosis and mood swings. Looking forward to being an irritable, fat, sweaty Betty with brittle bones then! To be honest, I'd take that over cancer any day. 

Now is a strange time. I feel like I'm in limbo. There is a chance that active treatment for this cancer may actually be over for me now, although I think it is likely that they will recommend radiotherapy, so perhaps not just yet. I'm full of contradictions. I feel relieved, but at the same time scared to feel too happy or positive just in case it bites me on the bum. Breast cancer can be a persistent disease that often likes to rear it's ugly head just as you think you've seen the back of it. Catching breast cancer early does not guarantee a positive outcome. In fact just writing these words makes me feel incredibly nervous, like I am somehow tempting fate. But then I don't want to spend precious time worrying about what might happen because as I know far too well, life is too short to spend it being miserable.

I feel excited about the future and a life rediscovered, but at the same time I feel hesitant and afraid of what it holds for me. The uncertainty feels almost overwhelming at times and I often wonder how I am going to be able to live happily and productively with the menancing cloud of cancer hanging over me.

I want my old life back, but I also want things to change - I want to feel that my presence in this world (however long that may be) is making a positive difference. I've been given one huge wake up call - I've stared my own mortality directly in the face. Where do I go from here? If the cancer really has gone, how do I use the second chance that I hope I have been given?

I feel like I should be making plans - there are so many things that I want to do, places I want to visit and ambitions that remain unrealised. But then, my life is still on hold. Because this isn't over just yet. Friday was one in a long series of hospital appointments and medical discussions that will continue, at least for now.

However, I am going to draw myself back in to the present and deal with the here and now. I'm going to tentatively allow myself to feel positive and try to deal with and enjoy each day as it comes. I'll also be repeatedly reminding myself of this mantra:

Younger women with breast cancer - Sarah M's story

The last featured story on my blog as part of this year's Breast Cancer Awareness month is from Sarah M, aged 38:

'On 20th May, aged 38 I found a lump in my left breast , felt by my inner arm, through a padded bra as I was getting into the car.  I straight away touched it with my hand and knew this was something serious that required immediate attention. I panicked realising that since the beginning of 2014, possibly longer I had unintentionally ignored all the signs that this could indeed be breast cancer.

The first sign I had was tenderness in the breast. I had been cupping my breast as I ran up and down the stairs because the movement was making it hurt ( they are only small too, a humble 34B at a push ). I was also aware that for a long time I was repeatedly saying "mind my boobs " to my little boy as we cuddled up. With him on my left side, when he leant into it there was more tenderness than usual. I subconsciously put this down to hormonal changes in my menstrual cycle. I suffered intense itching  around my nipple on and off for ages , possibly as early as mid 2013. Having suffered with itchy skin all over my body since I was a teenager I thought no more of it other than itchy skin.

I had a dull ache for a few months in my left armpit. I put this down to the physical side of my job moving and positioning vulnerable (some very heavy) adults and assumed it was muscle strain.

In Nov. 2013 I completed a course with South Central Ambulance, part of which was using heart monitors. We measured our own heart rates and mine was particularly high. The paramedic training me advised I get this checked which I did. I was tested for diabetes , thyroid problems , blood pressure and a couple of other illnesses that I fail to remember. All tests came back clear, although I just felt something wasn't right with my body . I ached more than usual and tired a lot more easily than I ever had.

Mentally I found I was becoming increasingly short tempered, emotional and anxious ( this could explain the rapid heart rate). I felt something wasn't right, that a change was needed and the fact that my periods were becoming irregular I began to think, and even said to my husband Paul, that I was having an early menopause .

Then a couple of months before finding the lump , Paul came home and gave me a copy of The Sun Newspapers Check 'Em Tuesday guide. He asked me if I checked my boobs to which I flippantly replied " No, I am too scared too in case I find a lump", what a ridiculous comment to have made.  It did however prompt me to check and when I checked properly I did feel the lump there. Yet again I ignored it , comparing to my other breast I just put it down to hormones, how stupid am I.

The final sign, I will always believe was a sign from a higher state of consciousness telling me to sort myself out.  In the space of ten seconds I had three short sharp stabbing pains which I can only describe as somebody ramming a knitting needle down into my breast , behind the nipple and pointing straight to where the lump was.  ( Ladies reading, this is a sign of some types of breast cancer but not the cancer I had or so I am told ). It only happened in those 10 seconds, on that day and never happened again neither had it happened before. Two days later I found the lump.

I didn't phone the doctor straight away as I knew I would be seen the next day and I had an event at the children's school to attend. I wanted to be there for them both and certainly didn't want to have to explain my absence to them or anyone else for that matter.

Two days later I was seen by a female GP who confirmed there was a definite lump , that had been there sometime, which she thought was a cyst. She said she had known of hard cysts before and if it was cancer I would of been seriously ill by now. Rubbish!!!!   I don't know who she was trying to convince, me or herself but I knew this was not presenting as a cyst.  I was referred there and then to Wycombe Breast Clinic.

I went home and Googled every single benign breast condition and their symptoms, resulting in yet more self diagnosis that what I had was serious. I just knew it was cancer.

Two weeks later ( the governments policy for being seen after visiting the GP ) myself and Paul attended the clinic where I was given an ultra sound scan to both breasts , followed immediately by a core needle biopsy, (possibly the second worst experience of my life, chemotherapy coming first by miles!!). I was then seen by one of the doctors in the consultants team. She confirmed that the lump was indeed suspicious and regardless of the outcome from the biopsy I would require an operation to have it removed.

One week later, Thursday 12th June ,another trip to the clinic for the results. After a two and a half hour wait ( these places are pushed to the limit ) a breast care nurse  called us through to see the main man, the consultant heading the clinic, Mr Cunnick. I knew straight away that the top breast surgeon in South Bucks NHS trust ( yep I Googled him too ) was not about to tell me I had a cyst  or anything else benign.  I wasn't even sat down as I was more concerned for Paul, when Mr Cunnick bluntly informed me what I already knew. I had Breast Cancer, no sorry or unfortunately, just, it's cancer,  invasive ductal carcinoma, 8/8 oestrogen positive and receptive to Herceptin. He briefly examined me then explained he would be carrying out my operation. I asked  him to remove both breasts, in fact what I said was " just take the whole boob off and whilst you are at it take the other one as well" but he said it was totally unnecessary and that a lumpectomy would be ample and he would hopefully save my nipple as well. He told me it was not genetic although this is a test I will be fighting for as it must start somewhere.  I then had a mammogram to both breasts and underarm and Mr Cunnick gave the results straight away.  The right breast was clear and as far as he could see there was no lymph node involvement. He explained this was the best type of breast cancer I could have if there ever was a best type and that it was all fully treatable. He told me I would more than likely have chemotherapy, radiotherapy , Herceptin and ten years of Tamoxifen pills . Despite his bluntness and the fact he was telling me I had cancer I really liked him, I trusted him and loved how he knew his job so well.

Five weeks later I had my lumpectomy and a sentinel lymph node biopsy where radioactive dye is injected into the breast and travels to the lymph nodes showing any cancer cells present.  Unfortunately there was metastatic cancer cells in the first  lymph node which was removed along with the second.

After a further two week wait it was back to the clinic for my results. This time the wait was four hours. So at 7:30pm we were informed  all the tumour had been removed with clear margins and the next step would be to see an oncologist who would explain the further treatment required. I thought he could have saved a lot of time by telephoning me with the results.

 

I am now two weeks past my second lot of  FEC chemotherapy. I have a further four to endure. I will then have a month off and start radiotherapy every weekday for 4four and a half weeks at a hospital a fifty mile round trek from where I live. I will have Herceptin by infusion every three weeks at the chemo unit and Tamoxifen pills for 10 years.  It is the worst time of my life right now, but I have to stay positive and strong for my husband, children, family and friends, I am very aware that it is not just me this has affected . I feel lucky a lot of the time that it is not a whole lot worse. I feel sad that so many women a lot younger than me are suffering this .

My tumour had been there for six months.

Had I not ignored all the early signs or been more informed as to what they indicated maybe life would be different now and I would not be dealing with chemotherapy. Consequently had the lump not physically presented itself or indeed grown inward ..................well, I dread to think. That is why it is so important to check yourself regularly and act quickly if you notice any changes. Remember that no one is too young to get breast cancer.'

Breast cancer and all that jazz

For the rest of October, as my contribution to breast cancer awareness month, I will be featuring a number of stories about diagnosis and treatment from younger women with breast cancer on my blog, written in their own words.

Before I do this, I wanted to write a post containing information about breast cancer that you may not be aware of. I’ll mostly be using information taken from sites such as Breast Cancer Care, with a smattering of information about my own personal situation.

Contrary to popular opinion, breast cancer isn’t just ‘one thing’. It’s a complex beast and there are a number of different types. I won’t go in to this in too much detail now but if you wanted to find out more about the different types of breast cancer you can find this here. Because all breast cancers are different, people have different treatments depending on what will work best for them.

Some facts about breast cancer (taken from the Breast Cancer Care website):

• The lifetime risk of developing breast cancer is 1 in 8 in women

This means that 1 in 8 women in the UK will develop breast cancer in their lifetime– it also means that 7 out of 8 women won’t develop breast cancer.

• Estimated risk of developing breast cancer according to age

Risk up to age 29, 1 in 2,000.

Risk up to age 39, 1 in 215.

Risk up to age 49, 1 in 50.

Risk up to age 59, 1 in 22.

Risk up to age 69, 1 in 13.

Lifetime risk, 1 in 8.

• Both women and men get breast cancer

Although it is much rarer than in women, men can get breast cancer too. Every year about 400 men are diagnosed in the UK.

• Older people are more likely to get breast cancer than younger people

After gender (being female), age is the strongest risk factor for developing breast cancer – the older the person, the higher the risk. Around 81% of breast cancers occur in women over the age of 50.

• Most cases of breast cancer don’t run in the family. Most cases of breast cancer happen by chance. Only around 5% of breast cancers are caused by inheriting an altered (faulty) gene.
• 
  
• Breast cancer can affect any woman, regardless of the size of their breasts (trust me mine are very modest!).
• 
  
• Finding a lump in your breast doesn’t mean you have breast cancer. There are several benign (not cancer) conditions that can occur in the breast and may cause a lump. Also many women will experience lumpy breasts just before their period. This is a normal response to changing hormones and often the lump or lumpiness disappears after the period. However, if this doesn’t go away, it’s important to get it checked out by a doctor. Any new lump should always be assessed by a doctor.

Even though breast cancer is more common in older women it can and does happen to younger women! Please check regularly and visit your doctor with any changes or lumps. And never be fobbed off. If you are unhappy push for a referral to a breast clinic.

Please click here for information about what breast changes look and feel like.

Breast cancer can be oestrogen receptive or not, HER2 positive or negative or triple negative. If a breast cancer is oestrogen receptive, simplistically it means that oestrogen is making it grow. My tumour is as strongly oestrogen receptive as you can get. This means the little bastard is doing the happy dance on the stuff. 

However, this is apparently a good thing as because they know what’s making it grow, they can use drugs to try and stop it coming back.

Tamoxifen (or Tamoxibollocks as its affectionately known) is a drug that they give women who have had oestrogen receptive breast cancer. Sometimes it is given to women with an increased risk of breast cancer as a preventative measure. Tamoxifen is usually given for five years after active treatment (chemo, surgery, radiotherapy) for oestrogen receptive breast cancer has finished. However, studies are now showing that ten years may be the more effective treatment strategy. I’ll be having Tamoxifen to try and reduce my risk of recurrence.  Because breast cancer can come back. Unlike some cancers, the term ‘cured’ is not used with breast cancer. It can return – either as a local, regional or distant recurrence. Most people do not have a recurrence, however it can and does happen.

So there are measures that you can take to try and prevent this happening. Tamoxifen is one. On the whole I am happy about this, but there are things that I find a little difficult to deal with. The first one is that you can’t get pregnant on Tamoxifen due to the risk of damage to the foetus. So ten years would take me to the age of 43 - fertility is not at its peak by this point. That’s if the chemotherapy hasn’t fried my ovaries first. But, for me I think I’d be terrified to get pregnant even if it were possible. All that oestrogen flying around. Would be like bloody Christmas for breast cancer. So, children more than likely out the window for me. Not literally obviously. I don’t go around throwing children out of windows…

Anyway, Tamoxifen also has some lovely side effects, mainly in the way of menopausal symptoms such as hot flushes, weight gain and osteoporosis. Delightful.

Surgery

On to surgery. As I have one node involved I will need to have a full axillary node clearance. This means taking out all the lymph nodes from under my arm pit and possibly the right side of my chest. Cutting through layers of muscle and nerves. Not pretty. I’m still in pain from having four nodes out so having around 20 removed doesn’t bear thinking about. It also leaves me at risk of lymphoedema – a permanent, painful and sometimes disfiguring condition which can involve having a very swollen arm.

I’m having chemotherapy first to try and shrink the tumour as the surgeons want to do a lumpectomy rather than a mastectomy. If they took it out now it would leave me quite disfigured as I’m definitely not Kelly Brook in the boob department. I think the words my consultant used were ‘quite small breasts’…

Chemotherapy is usually a given if you are a young woman with breast cancer. They want to try and give you the best chance possible to live a long and happy life essentially. The main purposes of chemo are to try and blast any other stray cancer cells that may have done a runner from the original tumour and be floating around the body and also to try and reduce the risk of recurrence.  Chemo is nasty and makes you feel like shit, but I’m happy to lay back and take all the NHS has got to try and give this thing an almighty battering.

When they perform a lumpectomy they need to get what is called ‘clear margins’. This means that when tested, there are no stray cancer cells in any of the healthy tissue that has been removed with the lump. If there is, it can mean another lumpectomy. And if this then fails again, a possible mastectomy. So, not as straight forward as whipping the bugger out and stitching it up!

Breast reconstruction

A mastectomy means removing all the breast tissue. Essentially taking the whole boob off. I wanted to clear a few things up about mastectomies and reconstruction. Breast reconstruction after a mastectomy is not like having a boob job. You do not just get a ‘new boob’ Pamela Anderson style. Reconstruction is a lot more complicated than that. I’m not an expert but here is my limited knowledge about breast reconstruction:

One method of recon is to build a new boob from tummy fat. This wouldn’t be an option for me as I don’t have enough. Reckon they would be able to build about a nipple from mine

Another is an implant. However, if radiotherapy is required, an implant can’t be inserted at the same time as the mastectomy as the radiotherapy is likely to damage the reconstruction. In this case, something called tissue expander can be used. This involves inserting an empty implant which is gradually over a period of time filled with saline. This essentially stretches the skin and tissue so that an implant can be fitted at a later date. But then this means another lot of surgery later down the line. And obviously no feeling or sensation in that boob.

Or you can just go flat and wear your battle scars with pride.

There is also an operation that involves taking tissue and muscle from your back and reconstructing breasts from that. My friend Sarah, who will be having a double mastectomy and this op due to a gene fault, described it like this:

'They take muscle and tissue from your back. I think this is what I'm having. It's basically swung round from your back to front. So boob removed at front chunk taken from back, swung round to front and stitched in to the gap, and hole in back sewn together. Lovely!  

There are other options and I’ve definitely explained reconstruction very simplistically - its much more complicated than this, but as you can see, definitely not a boob job!

So there we have it. Some breast cancer facts and information. Please do click on the links I have put in this post to find out more as I am definitely no medic and no expert! i hope you have found this whistle stop tour through the land of breast cancer informative - please stop by again soon!