A life well-lived

Maureen passed away peacefully yesterday, a week after she was able to celebrate her 59th birthday, something she never dared to plan. This is her husband Andy and I was privileged to be at her bedside when she drew her last breath, along with our sons Jamie and Finlay and a close friend. In her final weeks our house was filled with love, joy and laughter as she faced death with characteristic courage and good humour. She read every one of your responses to her last post and your affection and support gave her great comfort, so thank you.

Maureen hoped that such a frank and personal account of her experience would help others in similar situations but it was also an important part of her own cancer journey, allowing her to organise her thoughts, understand what was happening to her and find some happiness and even amusement in the darkest of places. It gave meaning and purpose to this most difficult and cruel period of her life and your engagement with it brought her immense satisfaction.

Once again, my sincere thanks and best wishes to you all.

Andy Tighe

“Looking relaxed, happy and hairy”

I never thought I’d take being called hairy as a compliment, but when I posted a photo of myself on Facebook recently and a friend* commented that I was looking “relaxed, happy and hairy”, I had to smile. It’s nearly seven months since I finished the breast cancer chemotherapy treatment that rendered me bald (The great Sugar Loaf uncovering) and now I just look like another greying, short-haired, middle-aged woman.

I’ve already had one haircut and I’m close to needing another. The chemo has made my hair curly and everyone says it looks nice and thick. It really isn’t, though. In fact, the hormone therapy I’m taking causes your hair to thin, so that’s another delight to look forward to.

So am I more dark than grey or more grey than dark? I don’t care either way, but it seems the answer varies depending on who’s doing the looking. I come in after getting the haircut and younger son Finlay looks at me and says “It’s quite dark, isn’t it.” Five minutes later husband Andy appears and, subtle as ever, says “God, it’s really grey!” Go figure.

I still haven’t used a comb or brush. I towel it dry, add some ridiculously expensive “product” and off I go. I love not dying or colouring it.

The photo you see here is the one I posted on Facebook. It’s from two weeks ago, in Madrid, and I’m standing outside the flat I lived in when I first went to live there almost 33 years ago. I lived in Madrid for three years in all. I met Andy there. I still have good friends there. I love the place. Andy and I were there a couple of weeks ago for a bit of a treat (If planning a holiday is a clear sign of recovery…). In all the times I’ve been back since living there in the 1980s, I’ve never felt the urge to go and take a look at where I used to live. This time was different, I guess because so much has changed in the past year. The door to the block of flats was open. I could have gone in. I didn’t, of course. Because you can never go back, and that applies as much to early last summer, before breast cancer came on the scene, as it does to September 1983.

Back to the hair. The other day Finlay greeted with me with “Ooh, bed head!” rather than “Morning, mum”. We’re moving on.

*Thanks, Brenda!

It’s not over ’til it’s over

The hospital-based phase of my breast cancer treatment has finished but there’s still lots going on. My final radiotherapy session was a week ago now (Bike 8 – Car 7. Victory is mine) but by tomorrow afternoon I’ll have been back at the centre every day this week except today. Given that I started radiotherapy on 4th February, that means I’ll have been there every weekday – including two days as an in-patient – for precisely a month. No wonder I’m tired. And there’s more to come.

On Monday, I had my post-radiotherapy appointment with the consultant oncologist who organised the radiotherapy treatment. Also on Monday, I had to have new dressings put on those parts of the irradiated area that are worst affected by the radiation. On Tuesday, I had a six-week check-up with the plastic and reconstructive surgeon. On Wednesday, I was back at the radiotherapy department to be checked over and to have fresh dressings applied. I’ll be there again tomorrow for the same.

Let’s start with the “radiotherapy-induced skin reaction”. This is really common in people receiving radiotherapy (Sunburnt backs, patchwork dressings and crop tops (Radiotherapy part 2)) and can involve redness (yes), dryness (yes), itchiness (yes) and skin breakdown, ie cracking or weeping (not quite, although one or two areas are still at risk). The reason they’re keeping a close eye on things is that radiotherapy side effects can continue to develop after treatment ends and indeed can be at their most severe around 7-10 days after your final session. While the radiographers don’t think the skin will break down now (if it did, I’d be at increased risk of infection), they’re continuing to take precautions until the 10 days are up. Better safe than sorry, especially with my record on infections.

On to Monday’s meeting with the oncologist. She examined the irradiated area and said she was “hopeful” the infection that had me in hospital for two days on iv antibiotics was resolved (It went downhill from there). I finished my course of antibiotics later on Monday and there’s been no flare-up, so it’s good news on that front.

There’s still swelling/fluid build-up in the reconstruction and under my arm and the cording  (where the lymph vessels have hardened following the removal of the axillary lymph nodes) there has got worse. The cording now stretches from where the reconstruction meets my chest to past the crook of my arm. The oncologist suggested that a massage treatment called manual lymphatic drainage or MLD might help with the swelling. From what I can tell, this could require sessions three times a week or more for up to three weeks. So much for finishing treatment. Except now, of course, instead of treating the cancer, we’re treating the side effects of cancer treatment. Major difference. The physiotherapy I was having – and loving – for the cording is on hold until the skin reactions from the radiotherapy clear up. The MLD wouldn’t start until then either.

As for the plastic surgeon, there’s good news there in that she didn’t seem overly concerned at the appearance of the reconstruction and surrounds… despite the swelling, redness, inflamed scars and indentations. She did agree it was not the “lovely” – my word, not hers – thing that it was in the aftermath of the operation. However, she said reassuringly that while it might take six months (yes, six months!) for everything to settle down and will likely require a second round of surgery to tidy things up, “I don’t think you’ll have any problems” in the longer term. Phew. My claim to fame is that she took a couple of photos for her collection. She didn’t often get to see her reconstructions like this, she said, ie in their full, immediate post-radiation, scarlet glory! I’m really not used to having this part of my anatomy photographed but I was happy to oblige.

The abdominal scar has healed really well. I got some advice on how best to massage the area above the scar to loosen it off (it’s still quite tight) and on scar care in general. Also, not that I did that that much of it before, but I can start running again. I’ve to wear two bras, though, a regular sports bra and a crop top!

Next week is shaping up to be a lot quieter on the appointments front. Hopefully the radiographers will sign me off at the beginning of the week and then I’ll have nothing until the following week when I’ve got appointments with the two consultant oncologists involved in my care. The oncologist responsible for the radiotherapy – a clinical oncologist – will review how the skin reactions and swelling are looking and perhaps I’ll get an idea of when I can restart physio and perhaps start this new MLD treatment. The oncologist who’s been responsible for all my drug treatment to date – a medical oncologist – will arrange a date for me to come in to the chemo unit for my next cycle of the bone-hardening drug, zoledronic acid (Breast cancer does indeed “come with baggage”). I’m to have this initially every three months and then every six months during the five years I’m on letrozole hormone therapy. I had the first cycle with my final chemo session last November. It’s hard to believe that was only three months ago. It seems like an absolute age.

 

 

 

 

 

 

 

In the end, the wig ditched me

I was feeling really exhausted and fed up on Monday evening. When I woke up feeling much the same on Tuesday morning, I decided radical action was needed. The bike, I thought, could be the answer. I would cycle to my fourth radiotherapy session. It would be the first time in around three months that I’d done any cycling.

Just making the decision made me start to feel better. I got the bike out and pumped up the tyres. I stuffed the pump and everything else I needed into a little backpack and, with my cycling headband* and winter cycling gloves on, I set off.

The bike, as always, is part of the solution (Love that bike! & A lesson on living in the now). I loved every second of the 5.7 mile ride to the clinic, even the hill, and I felt great when I arrived. I locked the bike up, looked in the backpack for my wig to throw it on before making my way inside and realised to my horror that it wasn’t there.

I swear my heart skipped a beat. It was the same feeling of utter horror that I’d had when I was out having a meal with some friends to celebrate finishing chemo last November and realised that I’d forgotten to give myself my critical post-chemo injection (Emergency delivery of post-chemo injection – to the pub!). That time, my older son brought the needed item to the pub. That wasn’t an option this time.

I lost my hair to chemo last September. I hadn’t gone out in public without some sort of head covering since. I finished chemo at the end of November and so my hair is growing back, but I hadn’t yet taken the plunge. Now I had no choice. I simply (?) had to take a few deep breaths and go for it.

I remember thinking this must be what a panic attack feels like.

I phoned my husband Andy for some moral support. While frantically pacing the clinic car park, I treated him to a monologue that consisted mainly of me repeating down the phone the same four-letter word over and over and over (think the opening scenes of the film Four Weddings and a Funeral). I then phoned a friend who’s a couple of weeks ahead of me in terms of treatment (although it has to be said she didn’t lose her hair). This is the friend who said she wouldn’t have worried about not having had the injection and would just have waited until she’d got back home. The two of them found my discomfort all highly amusing, which I have to say did calm me down somewhat. As they pointed out, I couldn’t have picked a more receptive audience for my wigless public debut.

Deep breaths taken, I walked in. It wasn’t easy. Of course everyone I met said how good I looked, how well my hair was growing back, etc, etc, etc. I could literally feel the tension fading away. And when I explained it had been an accident and how it had come about, it felt even better.

It turns out I’d put the wig in one backpack and the rest of the stuff in another. If you must know, I swapped because the first one clashed with the cycling jacket I was wearing! (Bet that surprised you, my fashionista nieces Louise and Shereen.)

I haven’t worn the wig since. And it’s such a relief. Perhaps something was going on subconsciously that morning, because just a few days earlier I’d written about how and why I couldn’t wait to ditch it (One’s changing relationship with one’s wig). In the end, the wig ditched me.

Whether the wig stays unworn depends, I guess, on how my hair grows out. But so far, so good, and I’ve got a story I’ll be able to dine out on for a long time!

*No helmet, I’m afraid. In the three months of having been bike-inactive for want of a better term, my helmet appears to have “got lost”. No-one in the house is taking responsibility for said loss, but I didn’t lose it and I’d bet my life Andy didn’t either. That leaves just two possible culprits. They know who they are. 

Post-op progress report No 3: One month on and things are going well

It’s exactly a month since my operation so it seems a good day to report on how my recovery is going.

There’s been considerable progress since the previous update on 3 January (Post-op progress report No 2: A bit of a moan). In a nutshell, it’s going well, although it’s still early days. I’m so much more mobile than I was a couple of weeks ago and everything is healing well. Today I drove for the first time since the operation, and was delighted to find that apart from the odd twinge in my upper arm I was absolutely fine.

I’ve stepped up the range of arm, shoulder and abdominal exercises I do, and also the number of reps I do of each. I do my abdominal exercises on the floor now rather than on the bed, with no fear I’ll get stuck and not be able to get up (Post-op progress report No 1: Biting off more than I can chew)!

My various scars are all looking good, or in the techie speak of the oncologist in her latest letter outlining my progress, “physical examination revealed excellent healing”. I have four scars:

• one where the breast meets the chest where they made the incision for the mastectomy and reconstruction and where the “flap” they took from the abdomen for the reconstruction is attached
• one under the arm where they removed the lymph nodes
• one around my tummy button, which had to be detached from the abdomen skin and then reattached
• and the pièce de resistance, the hipbone to hipbone beauty. The plastic surgeon removed the last of the original dressing from the abdominal scar when I saw her this afternoon and declared herself happy with it. There’s a small areas where it’s opened and that still needs a dressing. The scar on the whole is surprisingly thin.

While I have no control over how I’m healing, I can’t help feeling quite proud of my body for doing so well. It’s the least it can do after letting me down so badly by getting cancer in the first place. I’m also rather gratified that, as I’d hoped (Just generally falling apart), the results of the bone mineral density scan I had before starting hormone therapy showed that I have strong bones for my age. This matters as the treatment I’m on increases one’s risk of developing osteoporosis (Breast cancer does indeed “come with baggage”); it’s good to know I’m starting from a relatively high baseline. All that tennis and running and whatever other weight-bearing exercises I did in the past clearly paid off.

On a more trivial point, three weeks to the day after my operation I managed to get back into my jeans; up until then I’d been wearing trousers with elasticated waists. And yes, with my surgically shrunken midriff*, the jeans are MUCH looser round the waist than they were before!

For all the progress, though, there’s a long way to go. There is still considerable discomfort and soreness (pain?) around the upper scar areas and the upper, inner arm area is still very tender. It’s still tight around the abdominal scar and that affects general  mobility. I still have to take care getting out of bed, for example; in fact it occurred to me this morning that I may in fact have forgotten how one normally gets out of bed! There are lots of things I’m not even allowed to do yet with the operated arm. Yesterday, I reached up to get something from a high shelf in the supermarket and was quite dismayed to find I couldn’t get anywhere near it and had to use my left arm instead.

It’s the cording in the lymph vessels under the arm (A busy week with welcome news – “no further surgery necessary”) that’s restricting my arm movement and the miracle-working physiotherapist spent the best part of a 45-minute session this morning working on that. She and the consultants all tell me I’m doing well considering it’s less than five weeks since the op.

Fluid is continuing to collect in the breast/underarm area. I’ve now had fluid drained from the two areas where I was operated on a total of four times: on the third attempt, 200ml was finally extracted from my abdomen (A busy week with welcome news – “no further surgery necessary”) and to date from the underarm/breast area on separate occasions I’ve been relieved of almost 400ml, 100ml and, just yesterday, around 280ml. This will eventually settle down but it could build up again and require draining several times in the meantime.

I still tire easily. I regularly sleep for more than ten hours (albeit with interruptions quite often at around 5.30am from the numbness and tingling in my right foot that’s a side effect from the chemo and then again when the boys are getting ready for school and Andy for work). Getting ready in the mornings – showering, dresssing, first set of exercises – takes time. I’ve had a couple of evenings out and have been wiped out the following day.

Importantly though, it seems I’m on track to start radiotherapy – essentially the final stage in the hospital-based treatment of my breast cancer – in early February. I had my first meeting with the oncologist who’s in charge of my radiotherapy earlier this evening and we agreed that I’d have my radiotherapy planning session on 25 January, with a view to starting treatment on 4 February.

On balance, then, a positive progress report. Reading over this post, though, I’m concerned it sounds too negative given that my physical recovery is clearly going well. The fact that I’m tired probably has something to do with it. Today was a long day, with three different appointments – the physio, the plastic surgeon and the new oncologist. They all went well, but I did find myself thinking on the drive home from the last one that I’d had enough and that it would be nice if it were already all over. With everything else that’s happening (In Glasgow again, but for the saddest of reasons), I guess it’s not surprising I feel less upbeat than usual.

*I can joke about this now that the operation’s over and the recovery is going well, but before my op I really did find any talk of free tummy tucks quite offensive. You ladies who are reading, what would you rather be? Fit and healthy with a bit of surplus tummy fat or a breast cancer survivor with a flat tummy? I defy anyone to choose the latter.

 

 

 

 

 

 

 

 

 

Post-op progress report No 2: A bit of a moan

This didn’t start out as a moan but that what it’s turned into.

Things have been going ok but yesterday, for whatever reason(s), I found it really hard to straighten up when I was up on my feet and walking about. The abdominal incision felt really tight all day. It doesn’t feel that different today.

Also, I’ve realised I’m holding my right shoulder lower than my left and my right arm at a funny angle, presumably because of the nerve pain (I’m assuming it’s nerve pain) in my upper right arm. The pain is normal, apparently, and happens because some nerves are cut during the operation to remove the lymph nodes and need to repair themselves. This can take a few weeks or indeed months.

Also, the reconstructed breast is pretty swollen. It has gone from looking perfect to looking anything but. Again, apparently swelling is normal and it can take 4-6 weeks for things to settle down. I saw the plastic surgeon on 29 December and she did try to drain off some of the fluid she could feel – in the breast and the tummy – but nothing came out.

There are other things that have nothing to do with the op that I may as well include here.

First and foremost, the peripheral neuropathy or nerve-ending damage in the ball and first three toes of my right foot that started during chemo (An “excellent response to treatment”) is back with a vengeance. It manifests itself as numbness and tingling and while it almost disappeared while I was in hospital – perhaps because I was on so many painkillers? – it’s been creeping back since I came home and the night before last it kept me awake for what seemed like half the night.

I’m also still losing eyelashes and my eyebrows, a good month after finishing chemo. That doesn’t seem fair, although I’ve read that they can grow back and fall out several times before they finally grow back and stay.

Finally, another toenail has fallen off.

On the upside, this is my first day without painkillers and nothing feels any more painful than it did yesterday when I was still taking them.

I was feeling ok until I wrote all that down. Now I think I’m going to stay sitting on the sofa, wrap myself in the seriously comfortable blanket a friend gave me for Christmas (THANKS!), and not move all day.

Tennis II

A few of you have asked whether I did in the end challenge my two teenage sons to a tennis match before I started chemo. That was after I’d written a post (Tennis I) way back in the summer saying they hadn’t yet beaten me. Should I leave well alone or risk defeat, I wondered.

Well I had a knock-about with the older lad before that first chemo session back on 19 August. We played and chatted for around half an hour then he suggested we play a “friendly tie break”. He won 7-5. Now does that count as beating me in an official sense? I’ll leave it to you to decide.

I genuinely thought I’d be hanging up my tennis racket as soon as I started chemo. I really can’t put into words how delighted – not to mention astonished – I am to have been able to keep playing throughout. I pulled out of the ladies doubles team I was in and out of the club leagues, but I have played a fair amount.

Every time I got out there on the court was a bonus. I surprised myself when I won – although that hasn’t happened for a good while now – but in all honesty I was happy just to be playing. I no longer run for balls that a few months ago I’d have got to no problem and my lovely doubles partner has had to get used to losing not just some but all of the time. I still love it though.

And what a massive treat to get a session through our tennis club at one of the indoor practice courts at Wimbledon one evening last week! My older son (yes, he’s the one in the photo), my doubles partner and another friend from the ladies team I was in and I turned up a little early… to find Davis Cup TV commentators Andrew Castle and Jamie Baker playing on the court we would play on ten minutes later! And yes, we were told to wear “whites”.

So a million thanks to the lovely young man my son is turning out to be and to the fabulous women who’ve made time to play over the past four months. I’ve got two matches planned for this coming week, the final one for Friday, the day before my operation. You’ve got to really, haven’t you, especially when you have no idea when you might play again.

 

 

Emergency delivery of post-chemo injection – to the pub!

We’re out for dinner at a local pub with some friends the evening after my final chemo session. We’re sitting chatting away quite happily waiting for our meal to arrive. I go into my handbag and smugly take out my final post-chemo medicine of the day, a tablet of the drug domperidone to guard against nausea and vomiting that I’ve very responsibly remembered to bring with me.

I know how critical these drugs are; I’ve taken all my post-chemo meds religiously since I started chemo in mid-August and have felt or been sick only once.

As I go to take the tablet, I realise with a massive jolt that I’ve forgotten to give myself the injection I’m meant to take 24 hours after the end of the previous day’s chemo session. Chemo lowers your white blood cell production and so weakens your body’s immune system; this injection – of a drug called lipegfilgrastim – boosts your white blood cell production and so strengthens your immune system and reduces the risk of you getting an infection after chemo.

I break out in a cold sweat and my heart starts racing*. I have visions of myself being struck down with a massive infection if I don’t get hold of the injection and inject it straight away. It’s sitting in the fridge back home. I’m six hours late. I should have taken it at 3pm and it’s now nearly 9pm. 

We ask the waitress to get the kitchen to hold the food, I grab my jacket and dash out of the pub. I get outside… and have a flash of inspiration. I have two teenage sons at home. May as well put them to some use. So I phone home, and the son who answers – it happens to be the older one – gets the instruction to bring the injection asap, together with the “sharpsguard” container for the used syringe and an alcohlic swab to clean the area of skin where I make the injection. He’s under strict instructions to keep the injection horizontal (it mustn’t be shaken). He arrives at the pub 20 minutes later, apparently having tried unsuccessfully to persuade his younger brother to come instead. He’s holding the box the injection is in very carefully.

I head down to loo and do the deed. I guess they may have had the odd diabetic inject insulin but I would think this is the first time anyone has injected this particular drug in this particular pub! Incidentally, this pub, the Balham Bowls Club, has to be one of the best in south London.

Job done, and the rest of the evening passes beautifully. That was over two weeks ago. I stayed clear of that massive infection I feared I’d get. Phew.

*I told this story to a woman I met at the centre where I’m being treated and who I’d say is now a firm friend and she said she would just have assumed it’d be ok to wait until she got home a few hours later to have the injection. I think it’s fair to say I’m fairly stressed out over this whole thing.

 

Understanding your chemo regimen

This is my first “non-chemo Wednesday” since I started the first of my eight fortnightly sessions on 19 August. It therefore seems appropriate to post a piece about the chemotherapy regimen I was on.

People had all sorts of questions about my treatment. Why are you having chemo every two weeks instead of every three? Why are you having it before surgery instead of after? How do they decide which drugs to use? I had exactly the same questions… and many more besides. After much questioning of my oncologist and much online research, I think I’ve got the answers. This all gets a bit technical, but if you like detail, do persevere.

I was on a dose-dense, neoadjuvant (ie pre-operative) chemotherapy regimen that involved a drug combination known as AC-T. The acronym is made up of the initials of the drugs. The regimen comprised four fortnightly sessions of Adriamycin/doxorubicin & Cytoxan/cyclophosphamide in combination followed by four fortnightly sessions of Taxol/paclitaxel on its own. The words that start with a capital are the brand names and the words that follow are the active ingredients, in the same way as Neurofen is a brand or make of ibuprofen.

I had my eighth and final chemo session two weeks ago today, on 25 November (“Well done, Maureen”, “#8 Final” and I’m off the chemo leash).

Combinations and series of treatments

On the question of why certain drugs are given in combinations, chemotherapy damages cells as they divide and so combinations include drugs that damage cells at different stages in the process of cell division. Doxorubicin and paclitaxel are among the most common chemo drugs used for early breast cancer and they’re often used in combination with cyclophosphamide.

In addition, using regimens with combinations of chemotherapy that work differently increases the cancer cell kill by changing how the cancer is attacked. Also, combinations usually use drugs with different side-effect profiles. By combining different drugs, oncologists try to minimise toxicity. Too much doxorubicin can cause heart damage and too much paclitaxel can cause nerve ending damage.

Treatment is unlikely to kill every single cancer cell in the body, but chemotherapy (and/or radiotherapy) aims to reduce the numbers of cancer cells to such an extent that the remaining cells will be killed off by the body’s own defences or will die off naturally. Not all the cells in a cancer divide at the same time and giving chemotherapy in a series of treatments helps to attack as many cells dividing as possible and so kill them. Cells that were inactive during your first treatment may be active when you have the next, and so on with each session.

After all the hospital-based treatment (chemo, surgery, radiotherapy), I’m to go on long-term hormone therapy. Hormone treatment after chemotherapy in oestrogen-positive tumours (as mine is; indeed, most are) is designed to defend against any quiet or sleepy slow-growing survivor cancer cells. These can be starved by the lack of oestrogen and thus often don’t reactivate and grow because the host, ie the woman, by providing no or low oestrogen, is very unwelcoming. These potential dormant cells need to be starved for many years to give the woman the best chance of remaining free of active cancer. This is why hormone treatment in one form or another is now recommended for some women for ten years.

Dose dense

“Dose dense” means having the doses of chemo more closely together than is the norm, in my case every two rather than every three weeks. In some studies this has been found to lower the chance that the cancer will come back and improve survival in some women. Others, however, say there is very little to choose between the two approaches on this front.

Overall this dose-dense approach is seen as being slightly gentler on patients than longer regimens. For a start you’re in chemo for less time overall. In my case, you have eight sessions over 16 weeks as opposed to six sessions over 18 weeks. Another advantage is that since, at least in my case, the doses in the dose-dense regimen are slightly lower than they would be under a 6 x 3-week regimen (which in my case would have involved different drugs), the side effects may not be so severe. The downside is that you have less recovery time between sessions; they whack with the following session after just two weeks. A lot of people feel more or less normal during that third week in the longer regimen so you miss out on that week of respite. That might matter if, say, you really had to keep working while you were undergoing chemo. I was hugely fortunate in that I didn’t have to.

One possible – but rare – severe side effect of dose-dense AC-T chemotherapy may be an increased risk of leukaemia or preleukaemia. Leukaemia is a known risk anyway in patients taking cyclophosphamide or doxorubicin, regardless of whether they’re on a dose-dense regime or not. While it’s stressed that the benefits of chemo in preventing breast cancer from coming back or in extending life are likely to far outweigh the risk in this regard, it really is quite astonishing what you agree to when you sign the consent form for treatment.

Neoadjuvant

As for having chemo before rather than after surgery, I’ve been told that the expectation is that in breast cancers such as mine this approach ultimately will be shown to help stop the cancer coming back and so improve long-term survival rates. There’s no evidence for this yet, but I’m keeping my fingers crossed.

Neoadjuvant chemo is given as standard to women whose tumours are too big to be operable in the hope that it shrinks the tumour sufficiently to make it operable; while mine was big, it was always operable.

A known benefit of giving chemo before the tumour is removed is that you can see how the cancer responds – or not – to the drugs that are being given. With me, we know the drugs worked well (An “excellent response to treatment”, More good news, & Why my oncologist “couldn’t be happier”).

The final benefit of having chemo before surgery relates to whether you’re having breast reconstruction at the same time as your mastectomy, as I am. If you’ve had immediate reconstruction and need chemotherapy after your surgery, wound infection can be a problem as chemo can’t start until any infection you might have is cleared up and the wound healed. Having had the chemo beforehand eliminates this problem.

That’s it. I think I’ve finally got it in terms of understanding the ins and outs of my particular regimen. I hope you all have too.

 

An “excellent response to treatment”

I got some very good news at the consultation I had with the oncologist on Monday in advance of today’s chemo session. The MRI scan I had on 3 November – to review any effect that the chemotherapy drug I’d had two sessions of at that point was having on the breast cancer – shows there has been “an excellent response to treatment”.

The chemo is continuing to do its job, so much so that the “primary lesion is no longer clearly identifiable”, the much bigger suspect area that extended from the nipple back towards the chest wall “is now no longer distinguishable”, and there is no longer any sign of the cancerous lymph node there had been in the right axillary or armpit. This doesn’t mean the cancer is “gone “- you wouldn’t expect that anyway in cancers that are oestrogen positive like mine – and it doesn’t mean I need any less surgery than I was told I’d need initially. However, it’s good news in that it has positive implications in terms of my prognosis.

Regardless of the effect of the chemo on the tumour, for various reasons I was always going to have a mastectomy and also, it seems, lymph node clearance. The main aim of chemo was always to lower the risk of the cancer coming back in the future by killing off any cancer cells that had broken away from the main tumour and were on their way to a new site somewhere in the body but that that couldn’t be detected. Breast cancer cells spread through the lymphatic or blood system. As the oncologist explained at the start of the treatment, although I might be paraphrasing here, “We’re good at finding [breast cancer cells that have broken away] once they’ve got to where they’re going but not so good at finding them when they’re on their way there”. The fact that the chemo is working so well on something we can see (ie the tumour) implies it’ll be having much the same effect on any stray cells that may be out there but can’t be seen.

Importantly, the MRI scan report makes it clear that the scan “alone cannot predict the absence of disease”, that “the presence of residual tumour” within the breast cannot be excluded, and indeed that there are areas that are “presumed to relate to residual disease”.

I had a consultation with the breast surgeon too on Monday, straight after after I’d seen the oncologist, and he made it clear that mastectomy and lymph node clearance were the only safe options when it comes to surgery, again paraphrasing, “given that we’re looking to cure this”. They’ll do tests on the breast tissue and the lymph nodes they’ve removed post surgery to determine how much cancer is there. Clearly there will be less than there would have been had they done the mastectomy and nodal clearance in August before I’d had chemo. The lower your “residual tumour burden” at the time of surgery, the better your long-term prognosis.

There’s been a bit of a glitch with regard to chemo side-effects. I have developed in the ball and toes of my right foot some degree of chemotherapy induced peripheral neuropathy, a known side effect of paclitaxel, the chemo drug I’ve now had three sessions of after today. It’s a very strange type of pain, like a mixture of numbness and pins and needles and throbbing that comes and goes. It’s been enough to wake me up a few times in the middle of the night. The oncologist did a test whereby I’d to say whether she was touching my toes with a sharp object or a non-sharp object. I felt the touch, but pretty much “consistently failed” on whether it was from the sharp or non-sharp object. The oncologist therefore reduced the dose of the drug for the chemo session I had today by 25%.

I’ve to report back at my consultation with the oncologist in two weeks’ time – before my fourth paclitaxel session, which is my eighth and final chemo session (yippee!) – on whether this problem has got worse. The aim is to see the chemo regimen through as it’s having such a positive effect on the cancer, but not at the expense of long-term nerve damage that won’t get better. If the neuropathy continues to worsen – it started after the first round of paclitaxel – we won’t do the final round of chemo.

Lastly, the effect the chemo has had may also have positive implications for the reconstruction I’m having done at the same time as the mastectomy and lymph node clearance. Yes, I’ve decided in the end to go for an immediate reconstruction and indeed first thing yesterday morning met with the plastic surgeon who’ll be doing the procedure. It looks like the operation could be on 19 December. More on this at some point. It’s been a busy few days.

PS I’ve preferred to go to most of the consultations on my own but my husband was there on Monday when I met the oncologist and breast surgeon. This whole thing has been a massive education for me. Think what it’s been like for a man who claims not to have known until after I started chemo that we had white as well as red blood cells! When I told him I was adding this to the blog, he said he wanted to know first whether I was holding any other colours back from him. I think he was joking on this last point. Either way, our consultant haematologist friend is going to despair when she reads this.