Post-op progress report No 6: If this is as good as it gets, I’ll take it

I was at the cinema one evening in late October and towards the end of the film I became aware of something really weird. A couple of hours had gone by and I hadn’t felt the need to make any of the stretches or movements I’d been used to making regularly throughout the day to ease the feelings of discomfort in and around the area where I’d had breast cancer surgery more than ten months earlier.

Basically, nothing had felt wrong for at least two hours. I hadn’t felt the need to lift my right shoulder up and back to stretch out the tightening around the scarring in the area where my reconstructed right breast – which they made out of my tummy fat immediately after my mastectomy – meets my chest. I hadn’t felt the need to lift my right arm back behind my head and straighten it out to ease out the tightening or cording that’s still there in the armpit area where I had lymph nodes removed. I hadn’t felt the need to rub the inner part of my upper right arm to lessen the feeling of numbness and tingling I still have there, also a consequence of the lymph node removal surgery. Finally, I hadn’t felt the need to stretch out the tightness I still feel from time to time around the horizontal hip-to-hip scar where they took skin, fat and blood vessels for the breast reconstruction.

Ever since that evening at the cinema (My Scientology Movie, if you’re wondering), I’ve been noticing ever-longer periods throughout the day when all I can say is that nothing feels wrong and I’m not aware of any discomfort anywhere on my whole body. I’m still not used to it but, almost a year on from surgery (The basics), that’s what I call a result.

I wrote a blog for the Macmillan cancer support charity in mid-September on the importance of exercise during my treatment and ongoing recovery. I read back through it recently (What do you mean I look like a wreck?) and was amazed at how much things have improved physically even in the past two months or so.

So where are we now? Well I do still stretch out my shoulder and arm every so often during the day, though nowhere near as regularly as before. It’s far less uncomfortable than it was. I’m still having monthly physio sessions and those really help; I also still do stretching and strengthening exercises. The feeling is gradually coming back in that upper arm area; I still give it a good pummelling every now and then. The uncomfortable swelling in and around the operated area that was diagnosed as lymphoedema has all but gone; I still do a special massage in the affected area to help prevent the build-up of lymph fluid. Sometimes I’m aware of a general feeling of mild discomfort in the whole area but, more often than not, I’m not aware of anything.

What else? Well it’s only in the past couple of months that I’ve been able to sleep on either side or indeed on my front. Being able to sleep in whatever position I want after so many months of having to sleep on my back with my right arm stretched out behind my head is a really big deal. Having to stretch out the area around my abdominal scar is not a big deal; what 53-year-old woman is going to complain about having a tight tummy?!

There’s more. It’s been a good while since I’ve experienced anything like that fatigue I would feel from time to time that would make it hard to move very far from the sofa. It didn’t happen often, but when it did it wasn’t nice. Finally, I caught myself the other day running down the stairs on the London underground and diving onto a train. I’d stopped doing that as I was scared of falling or bumping into someone (Sod the compression bra, it’s summer!). Clearly not any more!

All in all, then, there’s been quite some improvement in recent months.

There’s stuff going on that’s related to treatment rather than to the surgery I had last December, but none of it’s too bad. The chemotherapy-induced peripheral neuropathy I had in my feet really is all but gone, although I still get some low-level tingling and numbness when I run or play tennis. It’s either that or my trainers are too tight! I’m tolerating letrozole, the daily anti-hormone therapy that I’m on, well. Letrozole can bring on hot flushes; for a couple of months these would appear out of nowhere but they’ve now subsided.

The “trigger thumb” that I’ve developed in my right hand is persisting. This is a known but rare side effect of letrozole, and it’s a bit of a drag. I can’t bend my right thumb and I’ve had to change the grip I use to serve at tennis and the way I hold a pen. My serve is neither better nor worse but my handwriting has gone from bad to appalling. It’s hard to do things where you need to apply pressure with your thumb – such as opening bottles and jars, tying shoe laces or using a grater – but it’s not the end of the world. I guess I could/should get treatment for it; instead I’ve just got used to it.

Finally, I sometimes wake up with stiff fingers on my right hand and my knuckles on that hand are a bit swollen – letrozole again. My rings don’t fit any more, which is a shame as I used to wear my late grandmother’s wedding ring and a signet ring I got for my 16th birthday on that hand. There’s no other joint-stiffening to complain of at the moment (I do have a painful left hip, but I’m hoping it’s nothing more sinister than a sports injury; I’ll get it checked out if it doesn’t go away).

This is my sixth post-op progress report and I reckon it could well be my last. The consultant breast surgeon told me that on the physical front we’d be doing well if I got back to 95% of what I was before. I don’t know quite how you measure that but if the way I am now is as good as it gets, I’ll settle for that and be quite happy. Now if someone could just give me a guarantee the cancer won’t come back, things would be just fine. But they can’t, of course. I don’t believe my “recurrence anxiety” will ever go away but in the meantime there’s no doubting these physical improvements are reasons to be cheerful.

 

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Breast cancer “reminders”

Quite apart from coping with the emotional side of having had breast cancer, there are plenty of physical reminders to make sure I don’t forget what I’ve been through any time soon.

I was thinking I would list the various side effects I’m experiencing in order of annoyance but that’s hard to do. I have different types and levels of pain or discomfort in different areas and each side effect is annoying in a different way. Here goes.

Peripheral neuropathy. I’m still experiencing pain – numbness, tingling and throbbing – in the balls of my feet and toes as a result of the nerve ending damage caused by the chemotherapy drug paclitaxel. This comes and goes, ie it’s not constant, and while it is improving, on some days – if I’ve done a lot of walking, say, or have worn heels – it can get pretty bad. I can’t remember when it last woke me up at night but it’s usually the first thing I’m aware of physically when I wake up in the morning. This can take up to a year to get better, although in some cases it’s permanent. So I’m guess I’m playing a waiting game.

Post-surgical pain. I still have pain – numbness, tingling (but different from the feelings in my feet) and a burning sensation – in the upper inner part of my right arm and what feels like muscle pain where the reconstructed breast meets my chest and below and behind my armpit. This is much less painful than the peripheral neuropathy but it is annoying, as this pain is more or less constant so I’m aware of it most of the time. I’m pretty sure the muscle pain – or what feels like muscle pain – has got worse in the past few days. It’s at its worst when I wake up, especially if I’ve rolled on to my right side while I’ve been sleeping.

The numbness and tingling is caused by nerve damage that happens during surgery to remove lymph nodes from the armpit area. The effects subside as you heal – within about three months for most people – although they can last or become worse months after the surgery. The numbness and tingling is definitely not as bad as it was but it’s still annoying. Another waiting game.

Breast lymphoedema. I saw the radiation oncologist on Monday and, while the cellulitis (It went downhill from there) has evidently cleared up nicely, she mentioned the dreaded L word – yes, lymphoedema – with regard to the persistent swelling in the breast area. Early treatment is recommended to help prevent hardening of the tissues and reduce the risk of you getting cellulitis (please, not again!). So I’m to have a course of manual lymphatic drainage (up to fifteen sessions over up to six weeks), a very gentle form of massage that allows the lymphatic fluid that’s collecting and causing the swelling to be redirected to – untouched and undamaged  – lymph vessels in the vicinity where the fluid can drain away more easily. Also, later today, I’m to be fitted for a lovely compression bra. I’m assuming this will be an even sturdier version of the post-surgery bras that I’ve really never stopped wearing since my op on 19th December – other than for a few days during radiotherapy when I had cellulitis and a bad skin reaction to the radiotherapy – because there’s always been some sort of swelling or another. Compression treatment for lymphoedema puts pressure on the area where you have swelling, and the pressure helps the lymph to flow through the lymph vessels. It also acts as an extra force for the muscles to work against, which helps the fluid to drain out of the area.

The swelling is not painful in itself, I suspect mainly because I have no feeling in most of the area in question. At rest, however, my inner upper arm rests against part of the swollen area and this aggravates the already tender upper arm.

By the way, breast lymphoedema I can cope with (Fear of lymphoedema); please let it not spread to my arm.

Cording. Now that the cellulitis has cleared up, I can start having physiotherapy again on the cording, this hardening of the lymph vessels to form tight bands under the skin from the chest or under arm down to the elbow and beyond that can happen after breast cancer surgery involving the axillary lymph nodes. The cording is not painful as such but, again, that’s because I have limited sensation in the affected area. I also know to limit my movements so that it doesn’t hurt where I do have feeling. It’s only painful in those areas when I forget and try to stretch further than I am able to. With physio and the arm and shoulder mobility exercises I’m continuing to do every day, the cording should go over the next few months.

Hip-to-hip scar. I was really nervous about the potential consequences of the surgery to get the fat and blood vessels from my abdomen for my reconstruction. While the immediate aftermath was tough, it’s the part that’s giving me the least trouble now in terms of ongoing post-surgical pain and/or discomfort. The scar that runs from one hipbone to the other has healed well really well (there’s just one small area of less than an inch long where it’s a bit messy) and while the surrounding skin can still feel very tight and hard in some places, there’s no pain. Discomfort, yes, but not pain. I’ve been shown how to massage the area above the scar to loosen the skin up and I do abdominal stretching and strengthening excercises at least twice daily. Things should continue to improve.

Lost toenails. Chemo played havoc with my nails, especially my toenails (Note to self – keep your toes covered when trying on shoes). The nails on my two big toes are in the process of growing out and the nails I lost on four other toes are growing back in*.

I think that’s it on the physical side effects front.

And then there are the drugs:

Hormone tablets. I take one tablet of letrozole every day and will do so for the next five years, when I’ll move on to a different hormone therapy, for another five years. I count myself lucky in that I seem to be tolerating letrozole very well; I have no side effects to speak of.20160311_100210

Calcium and Vitamin D supplements. Letrozole can cause osteoporosis; the calcium and Vitamin D supplements I take daily are to counteract the effects of the letrozole in this regard.

Iron tablets. I’m still taking these three times a day for post-operative anaemia. I stop taking them in a few days, three months after my op.

Zoledronic acid. I’m to have my next cycle of the bone hardening drug, zoledronic acid, this coming Monday. Thereafter I’m to have it every six months for as long as I’m on letrozole. This drug – and other drugs of its kind (bisphosphonates) – is used in the treatment of post-menopausal women with early-stage breast cancer as it’s been shown to lower the risk of them developing osteoporosis and of breast cancer spreading to the bones. This treatment is given via an iv drip in the chemo unit at the clinic.

Now none of the lingering side effects I’ve described above is so painful that I have to take painkillers. And I’m otherwise quite well, if still pretty whacked. And it’s still early days and hopefully everything will get better over time. But for the moment these things are annoying and they do cause pain and/or discomfort. They – and the drugs and exercises that I still need to take or do – are obvious reminders of what my body’s been through over the past seven months. I used to think I’d been quite lucky in terms of physical side effects. Reading back through this latest post, now I’m not so sure. I guess it’s all relative and no-one said it would be easy. One thing is certain, though. Regardless of how I deal with the emotional side of things, physically I’m really not going to forget any time soon that I had breast cancer, am I?

*My fingernails are looking great, I’m relieved to report.

One down, just 3,652 to go

Yesterday I took the first of the 3,653 tablets I’m due to take over the next ten years as part of my long-term hormone treatment plan.

The oncologist said in her letter to the breast surgeon before my last chemo session in November last year that I should start hormone therapy as soon as I was recovered from my operation of 19 December and “if up and about”. I’m not exactly sure what recovered means – fully? partially? – but I’m up and about at least some of time so I decided that rather than start taking the tablets on some random, grey, nondescript day later in the month, I’d start on 1 January, the first day of the new year. So on every Hogmanay (or New Year’s Eve for the non-Scots among you) for the next nine years, I’ll tick off another year and on Hogmanay in 2025 I’ll have a massive celebration to mark my finally having finished treatment for something that happened more than a decade earlier.

That is, of course, assuming that the cancer doesn’t come back in the meantime or that some accident or other unforeseen event doesn’t cause me to shuffle off this mortal coil before then. There are no guarantees but I’m generally a glass half-full kind of gal so let’s look on the bright side ;-). And let’s face it, there are no guarantees for anyone in this life, it’s just that most of us never think about it and do just fine.
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So just to recap, the breast cancer I have (had?) needs oestrogens to grow (Understanding your chemo regimen &  Breast cancer does indeed “come with baggage”). Every day for the next five years, I’ve to take one tablet of a drug called letrozole. Letrozole is one of a group of medicines called aromatase inhibitors. Aromatase inhibitors lower oestrogen levels in the body by blocking aromatase, an enzyme that converts other hormones into oestrogen. As a consequence, any slow-growing or dormant cancer cells that may have survived chemotherapy (and/or radiotherapy) are starved of the oestrogen they need to grow and so they slow or stop growing and/or spreading to other parts of the body.

Hormone treatment is now recommended for some women – I’m one of them – for ten years. Once the five years of letrozole are up, I’ve to take one tablet a day of another drug, tamoxifen, also for five years. That’s where the figure of 3,653 comes from – one tablet a day of either letrozole or tamoxifen for the next decade, and the decade includes three leap years.

The side effects of aromatase inhibitors can be severe and many women stop taking these medicines as a consequence. One of the reasons the oncologist emphasised recovery and being up and about is that exercise can help alleviate “the likely side effects [of letrozole] including bone ache and joint stiffness”. I’m not exactly super mobile at the moment but my daily walks on Tooting Bec Common must count as some form of exercise. Another reason for starting now is that I’m hoping that if I do get these side effects, I won’t notice them so much among all the other aches and pains I have at the moment following my operation and the chemo. I’m only half joking there.

Anyway, fingers crossed. Happy New Year everyone, and here’s to 31 December 2025.

 

 

 

Breast cancer does indeed “come with baggage”

I’m at my appointment with the oncologist on 23 November. We agree I should go ahead two days later with my final session of chemotherapy. So far, so good, as it wasn’t entirely certain that that last sesssion would happen (What a difference a year makes).

The oncologist then goes on to say that I should start hormone therapy as “as soon as you’re up and about” after surgery. My operation is on 19 December (19 December – it’s official). I hadn’t really thought about when I’d start on that, but still so far, so good.

Then the oncologist asks if I can make an appointment with the dentist for the very next day. Now that throws me. Instead of trying to work out why I need to see a dentist, the only thing I can think of initially is who on earth gets a dental appointment at such short notice.

You’ll need to bear with me to find out the relevance of the dentist.

In my case hormone therapy (also called endocrine therapy) initially will consist of one tablet a day of a drug called  letrozole. I’ll be on it for five years, and this will be followed by five years on another hormone therapy, tamoxifen.

Let’s focus on letrozole. This is used to reduce the risk of breast cancer coming back in post-menopausal women whose cancer is oestrogen receptor positive, or ER+. In breast cancers that are ER+, oestrogen supports the growth of the cancer. Post-menopausal women still produce some oestrogen and letrozole’s job is to stop the body doing that.

Now as we women of a certain age know all too well, a lack of oestrogen over time increases our risk of developing osteoporosis. one more yearTo lower that risk in women taking letrozole, for example, a type of drug called a bisphosphonate may be prescribed. In lay terms bisphosphonates are called bone-hardeners or bone-tougheners. These drugs have been shown to have two benefits when used in the treatment of post-menopausal women with early-stage breast cancer. As well as decreasing your risk of developing osteoporosis, they have been shown to reduce your risk of developing bone metastases (tumours in the bones that result from breast cancer cells that have broken off from the original tumour settling in the bones and growing there) and improve survival.

The oncologist wants me to have a bisphosphonate called zoledronic acid while I’m on letrozole, initially every three months and then every six months. The idea is for me to have the first dose during my final chemo session. The oncologist says there’s “no urgency”, but suggests that since the first dose often causes “bone ache, joint discomfort and a ‘flu-like illness”, I might want to get “all the unpleasantness” out of the way before the next phase of treatment, ie surgery. There I was thinking I was to have three weeks’ respite between chemo and the op, but bring it on, why not?

Now we come to the part that involves the dentist. A rare side effect of zoledronic acid is a condition called osteonecrosis of the jaw. Now I don’t know about you, but I’m always wary of words with “necro” in them as they all have something to do with death. Anyway, osteonecrosis of the jaw is when healthy bone tissue in the jaw becomes damaged and dies (told you). Sounds nasty. Most cases happen following an extraction. Thus the appointment with the dentist. If I were likely to need to have a tooth out any time soon, I wouldn’t have the bone-hardening drug until six weeks afterwards.

Against the odds, I get an appointment with the dentist for the following day. A thorough check-up shows that while there is plenty wrong with my teeth (that’s a whole other story), I’m unlikely to need any extractions in the near future. So I go ahead and am given the zoledronic acid during my final chemo session on 25 November. It’s given as a drip over 15 minutes or so. One week on, I can confirm that it does indeed cause bone ache; this started a couple of days after treatment and it lasted for three or four days. It’s like mild stomach cramp, except it’s in your bones.

If you’re wondering how I got a dental appointment so quickly, well I did what I think is called “playing the cancer card”. I simply told the receptionist the facts and, hey presto, she said there had been a cancellation and gave me an appointment.

Also to ward off future bone loss, I’ve to take daily calcium and vitamin D3 supplements. codThe only times I’ve ever taken supplements were as a child (Vitamin C and cod-liver oil*) and when I was trying to get pregnant (folic acid), so this will be yet another breast cancer-enforced lifestlye change. As for letrozole, it doesn’t just put you at risk of developing osteoporosis. Bone ache and joint stiffness are other common side effects, as are “menopausal-like symptoms” such as hot flushes and night sweats. Honestly, as if one menopause in a lifetime weren’t enough.

I remember the breast surgeon saying at my very first consultation with him back in July that breast cancer “comes with baggage”. The further down the line I get with this whole thing, the more I realise just how right he was.

*Who remembers the horror of cod-liver oil capsules? Every day for years as my brothers and I left the house for school, we’d each have to take a Vitamin C tablet and a cod-liver oil capsule. My god, those capsules were disgusting! They were so hard to swallow and I can still remember the panic you felt when you realised you weren’t going to get them down your throat before the capsule coating dissolved and the oil seeped into your mouth. That memory had very rightly been deeply buried until now. I fear it may take considerable effort to re-inter it.