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Every Woman’s Worst Nightmare

So, I got the short straw… [mind-bogglingly unfair as one cousin said]. Yup, that about sums it up! There’s no known breast cancer in my family, but it’s there and I have to deal with it.

I’d felt by chance what I thought was a small lump but dismissed it as ‘nothing’ because that kind of thing only happens to other people, right? Wrong! I didn’t regularly check my breasts and when I did it was a rather cursory grope, because of course you don’t want to feel anything untoward, do you?

My aim in writing this summary of my experience is to reassure anyone else who’s about to embark on her/his [it affects 2% of men] fight with this disease. Cancer research/technology has advanced so much over the years that breast cancer is considered curable and certainly not the ‘death sentence’ it once was, even if it’s grade 4. I thought others might find it useful to know how I fared and, I hope, not feel as scared as one might otherwise do.

I had recently moved to Spain when my bombshell put everything on hold. The good news was that the new hospital in Dénia has an excellent reputation, especially the Oncology Department and I felt I was in good hands. Fortunately, I also spoke reasonable Spanish.

I’d just turned 65, was in good health for my age and weighed 56 kg. I’ve always been active/sporty, walked the dog twice daily and am convinced that all those activities, plus a positive attitude, certainly helped me fight the dreaded C.

Diagnosis

The preliminaries seemed to take forever: blood tests, mammogram, ultra-sound, MRI scan for a better look at the beast, later still I’d an abdomen scan, mainly to check the state of my liver.

The surgeon confirmed the diagnosis of grade 3 breast cancer, intermediate size = 2. Grade 4 is the worst and 3 the largest regarding actual size. As mine was max 2.5 cms [so much for the ‘small’ bump] and therefore over the 2 cms limit for size 1 treatment, I had to have chemotherapy first to try to shrink the tumour before the surgeon would consider operating to remove it. In some countries the practice is to remove it first which then usually obviates the need for chemo or radiotherapy. I’d had a lymph node biopsy to check it hadn’t spread further… [negative].

The biopsy involves being injected with a special radioactive dye the day before the op. Be prepared to wait at least two hours as it has to permeate around the body, then they take an X-ray to ensure it has before letting you go home.

The operation next day took about half an hour as a day patient and in my case three nodes were removed. Even as little as eight years ago, all lymph nodes were removed in the armpit whether the cancer had spread or not, ‘to make sure’ but meanwhile research has proven that if the cancer hasn’t spread into the first ‘sentinel’ node, then it’s 99% certain it hasn’t gone any further. I was sent home in the afternoon and my scar healed well. It’s a good thing to gently massage the area to help scar tissue causing the outer skin to attach to anything inside. The outer side of my arm was a little numb for quite a while.

A small ‘clip’ = piece of metal, is inserted painlessly into the centre of the tumour so they know where to operate should the tumour disappear during treatment.

Write a list of questions for your doctor or you’ll forget some and ideally take someone with you as a second pair of ears.

Cancer – lay person’s understanding…

1 in 9 women get breast cancer in the UK, 80% of whom are over 50. HRT can contribute to cancer.

Quick lesson in what goes wrong. Everyone has the potential to develop cancer, but it’s only in the unlucky few that a cell has a hiccup and the healthy cells fail to notice the mutation. The cells divide faster than healthy ones, although flawed, also at a different rate. Seems it can take five to eight years for small malignant cells to reach 1 cm so you’ll have had cancer much longer than you realised.

The good news is that cancer cells are not properly formed – therefore weak – hence chemotherapy working so well to kill them off. Yes, the chemo is toxic to healthy cells too, but they have the ability to recover.

Chemotherapy attacks the soft tissues in particular i.e. throat, mouth, oesophagus, stomach, probably womb, certainly vagina. I often had a dry throat and nostrils [latter particularly in second 3-month session]; sometimes felt as though I’d a lump behind my Adam’s apple.

Websites: My oncologist only recommended an American one: http://www.cancer.net/but I also consulted the MacMillan site: http://www.macmillan.org.uk/Home.aspxboth of which I found useful.

Treatment

I underwent six months of chemotherapy in two batches. Firstly, every three weeks, with the aim of really whacking the tumour on its head and secondly, 12x weekly of a lesser, different dose to help ensure that if I had any other cells elsewhere thinking of misbehaving, they’d also be zapped. It’s a daunting prospect, mainly because you don’t know how you’ll react to the chemo and, of course, the underlying question: “will it work?”.

First three months:I went through my first chemo session somewhat in zombie mode. A blood test was usually required when a drip was inserted into my arm or hand. The doctor would confirm whether the blood count was OK or not, especially the neutrophils i.e., white blood count. My immune system had already taken a ‘hit’ by the time my second dose was due, which had to be postponed a week [and once later on]. On subsequent occasions, I mostly had to inject myself [Neulasten, Neupogen or Zarzio] on the morning of my chemo, which helped boost my blood. It’s NOT difficult/painful and with a very fine needle in the tummy, you barely feel the prick.

There are a couple of pre-meds which are dripped in, before – in my case – Ciclofosfamida[+Metrotexate]and then Adriamicina[+Doxxorubicina, Eppirubicina] bags of chemo. The latter is red – known as the Red Devil – and even before I got home, I was peeing red. Don’t panic! That only lasted about a day. Finally, there was another ‘cleansing’ drip and after about 2½ hours I went home.

I felt fine, just slightly light-headed … until about six hours later when someone put a vice round my head [I neverhave a headache]. I foolishly didn’t take the anti-nausea pill [Primperan] before dinner, not thinking it would kick in so quickly and regretted it in the wee hours of the morning when I spent some time emptying both ends in the bathroom. That was the only time I physically vomited as I religiously took the anti-nausea pills after that! I also didn’t experience the ‘vice’ round my head on subsequent occasions.

My experience was that after the first two chemo sessions, it took 4 or 5 days to get over the kicked-in-the-stomach feeling of nausea. Surprisingly, it took 10 and 12 days respectively after bouts 3 and 4, I suppose due to the accumulation of chemo in my body. That was the worst period for me. I didn’t feel like eating and had to force myself to do so, not helped by my taste buds going haywire almost immediately.  Food – and even water – tasted metallic and I couldn’t stomach wine which tasted foul [about six weeks after my last chemo I could appreciate wine again, phew!]. A couple of times after the Emend pills I also had difficulty swallowing, as though my throat was constricted and had to help food down in small bites with water. Once I was over the worst of the ‘nausea’ feeling, I felt reasonably OK again apart from never feeling hungry.

Second three months: I was offered Docetaxel every three weeks or weekly Paclitaxel and opted for the latter because my medical friends advised the latter was generally better tolerated. The treatment takes 1½ hours to infuse. My pre-meds were: Dexmetasona[steroid to counteract some side effects which slightly filled out my face], Polaremine [anti-histamine] and Raniticline [to avoid high stomach acidity].

I tolerated this regime MUCH better as I did not NOT feel nauseous. I still didn’t feel hungry and my taste buds remained naff, but I ate food with a little more gusto, especially mashed potatoes. I did, however, often have glacially cold hands and was generally more sensitive to cold [this was Oct-Dec]. Sometimes had slight ‘palpitations/muscle spasms’ in my chest or throat for brief periods.

I had an ultrasound again in October [four months after treatment started], which was inconclusive, which worried me a little: it later transpired it was because the tumour had practically disappeared!

NB: You cannot go to the dentist during chemo as blood doesn’t clot the same any more.

I was lucky to have my own medical ‘advisors’ [in Singapore, Germany and Norway!] who gave me advice, interpreted certain medical terms and made useful suggestions regarding my treatment, not least a pathologist who confirmed my decision to have a mastectomy. “In my experience, 95% of the time when I have seen a mastectomy specimen after a lumpectomy, there are microscopic islands of tumour cells at the margin.”

Six months after my last chemo I had my blood checked and the Leucocytes were still on the low side, and also B12. Lack of the latter can lead to depression, irritability, memory problems… due to the body not properly absorbing the nutrients from one’s food, so it’s worth having it checked. The solution is injections or pills – I take the latter.

My Side Effects

Even if you have the same drugs as me, it doesn’t mean you’ll have the same side effects, but this was my experience.

Hair: Apart from feeling of nausea which I think everyone suffers to a greater or lesser degree, depending on the type of chemo mix, hair loss is inevitable, especially after Adrimicina. I had my hair cut short in anticipation. My first tuft came adrift in my fingers two weeks after the first chemo which was earlier than expected! I didn’t lose quite all the hair on my head, but what remained was very sparse. That didn’t stop me in summer from going out minus scarf.

Over subsequent weeks I slowly lost hair elsewhere: legs, armpits [great!], arms, nostrils and nether region. It wasn’t really until I’d finished chemo, mid-December, that the last of my eyebrows disappeared, and my remaining upper lashes fell out mid-January, but started growing again within the next fortnight, likewise eyebrows and pubes!

It would seem that about eight weeks after the last chemo, the body recognises it is no longer being poisoned and mother nature tries to get back to normal asap. My head became covered in soft, ‘downy’ hair of uneven lengths, which started off slightly curly, but unfortunately decidedly white – I’m calling myself a platinum blond! I’d not realised hair had returned to my legs and arms [longer and also slightly curly] as it, too, was soft. Unfortunately, it also grew on the backs of my hands and fingers which I was reluctant to shave in case it became coarse and grew more quickly [but that stopped]. My eyebrows returned a bit bushier, maybe more nostril hair, too; eyelashes took about three months to reach their previous length.

Fingernails:At the start of chemo, they suddenly grew and became very strong, whereas I’ve had brittle nails for ages.  However, during the second batch of chemo treatment, they reverted to normal and by the end of February, couldn’t quite decide whether to be strong or break. Other people told me their nails tended to be worse, which has proved to be the case.

Oral hygiene: About a month after my first chemo, I developed a white furry tongue which at times felt as though it extended the length of my oesophagus and into my stomach, which it probably did [contributing to my blahfeeling and lack of appetite]. It’s very important to pay strict attention to your mouth. I brushed my teeth after each meal and carefully flossed in the evening. I obtained a very good mouthwash from the hospital, but also alternated with either a saline mixture [dessert spoon of sea salt and 500 mls water] or ½ teaspoon of soda in a glass of water [latter preferably fizzy]. Apart from two or three occasions when I thought a small ulcer was developing, I managed to avoid them: if your mouth is so sore that you can’t eat, that must be very difficult. An ice lolly helps to sooth it. I did also resort to an antifungal product, which didn’t help as much as I’d hoped, but again it’s a case of letting nature take its course. By March [three months] my tongue was more or less back to normal.

Smell/taste: I quite quickly developed an acute sense of smell, which was unpleasant, especially in the kitchen [vegetable waste made me want to heave] and bathroom where I could smell urine even after cleaning the toilet. I was also concerned about my own body odour, but my husband assured me he couldn’t smell my armpits! At times I could smell my insides/chemo when I breathed: a slightly sickly odour.

I very quickly went off bananas and coffee, but otherwise could eat most things, even though they didn’t taste like before. I tried various types of tea: green, herbal, but one piece of advice was not to try to drink what ‘they’ say is good for you if you don’t particularly like it.

Food/supplements: Being relatively skinny to begin with, I was concerned I might lose a lot of weight, but only shed max three kilos, then [minus boob] stabilised at 54 kg.

My oncologist advised me to eat what I wanted including butter [which I normally avoid] to ensure I’d sufficient fats. There are several special cookery books for cancer patients. Initially I couldn’t bear the smell of food cooking.

I obtained Complan food supplements but only used a few in the end as I DID manage to eat, albeit it with rather a struggle the first three months. I enjoyed some smoothies, made either with fruit or vegetables. If necessary, eat smaller amounts more frequently.

Various people suggested all sorts of alternative foods/powders but as my oncologist pointed out, if they definitely worked for everyone, all doctors would be recommending them, so I stuck to healthy food, avoiding acidic fruit juices as liable to exacerbate any mouth problems.

Miscellaneous

Drink lots of water – I always had a large glass by me and tried to drink the recommended two litres daily, taking a bottle with me when I left the house. Liquid intake includes tea, coffee or juice. I found adding some lemon juice helped the taste of water or mixing it with a slightly fizzy sports drink. Of course, what goes in, must come out so I needed to go to the loo more frequently, which interrupted sleep at night.

Didn’t sleep too well during the 2^ndtreatment session and found Horlicks before bed, or in the middle of the night, helped. Don’t worry about it: try to catch up on sleep at other times of the day.

After about three months I developed what I at first thought were blisters in my nether region, but also ‘cold sores’ at the edges of my mouth, which I’d never had: eventually diagnosed as herpes and again chemo attacking soft tissues. Nearly everyone has the herpes virus in their body, especially if you’ve had chickenpox, but it usually remains dormant. With my lowered immune system, it was ripe for attack.

On days when you’re feeling rough, just remember that your tumour is liking is as little as you are – it is worth the aggro when you get a clean bill of health at the end!

After Chemotherapy Treatment – What Next?

1. Hormone treatment

Most breast cancers are fuelled by hormones and info is gathered about oestrogen and progesterone receptors, the latter being more problematic. The presence of hormone receptors on the cancer cell surface can indicate that hormonal treatment will be effective in killing the cell – that was my case = daily Tamoxifen should work well.

Post-cancer hormone treatment which is actually anti-hormone, to repress too much oestrogen trying to cause any more havoc. Oestrogen attaches to receptors on breast cells and stimulates them to take on cellular building blocks and divide. Tamoxifen enters the oestrogen receptor site and turns off this mechanism and may actually send the cell into a programmed death cycle. Despite that, it acts like oestrogen on other tissue and has positive effects on bone metabolism, plus it can lower cholesterol. About 1% of women taking Tamoxifen develop a uterine malignancy due to endometrial thickening of the lining of the uterus, so have to have regular gyny check-ups. The potential survival benefit for those on Tamoxifen is an average 10-25% greater than for women who do not take it.

During my treatment, Tamoxifen was prescribed for three years then a switch to Aromatase inhibitors for the 4^thand 5^thyears However, it is now felt that it doesn’t contribute to uterine cancer, so I took Tamoxifen for 10 years with no apparent side effects. In menopause, the Adrenal gland produces post-menopausal oestrogens. Hormones produced in the adrenal gland are converted in fat and muscle tissue by the aromatase enzyme into oestrogen. Aromatase inhibitors can block this aromatase enzyme so that oestrogens are not produced. The use of these drugs is so effective that there is a greater than 99% reduction in the production of oestrogen. Three drugs [Arimidex, Femara, Aromasin] have proved more effective than Tamoxifen, better in preventing reoccurrence and with fewer side effects. Arimidex also doesn’t cause uterine cancer or blood clots, plus fewer hot flushes. However, it can increase joint pain and seems to increase the risk of osteoporosis.

1. Breast Reconstruction

My oncologist said I had three options: 1} I MAY be a candidate for a revolutionary new-ish treatment called ROLL which involves a sort of keyhole surgery under local anaesthetic which sucks out the remaining tumour cells, 2] Small lumpectomy or 3] Mastectomy and reconstruction. “We have an excellent plastic surgeon here” “But then I’d have one firm boob and one succumbing the gravity” “No, he’d tweak the remaining boob to match” [why not make the reconstructed one match the real one…?].

Reconstruction can involve three operations: 1} pull muscle round from your back to the front [takes several months and is quite painful], 2] reconstruct boob and 3] reconstruct a nipple. Or, just expand your skin over a few months and insert a saline sac.

They claim lumpectomy + reconstruction is as effective as a mastectomy BUT based on my Singaporean friend’s feedback, I opted for the latter without reconstruction = no problem re scuba diving and someone else [radiologist] decided against it: “for many it causes as many problems as the condition itself”. Radiotherapy may cause skin soreness for a few weeks, tiredness for months, pain in the arm, lung damage [<1 in 50]. More likely to have shoulder stiffness after a mastectomy [but exercises should help avoid that], I didn’t, and maybe more numbness/tingling in upper arm for some months [occasionally permanent].

All options involve cutting/pulling/mutilating the body elsewhere. My decision, therefore, was to have the mastectomy and falsie. A friend introduced me to a silicone ‘chick fillet’ = perfect!  I woke to no pain whatsoever after the op which lasted several days until the nerve endings started to make themselves known with the occasional sharp twinge. A blood drain remains inserted for up to a week, with bottle being emptied at the hospital, so that they can measure the volume.

Lymphoedema

Lymphoedema causes limbs to swell and is mostly an irreversible ‘illness’. The lymph drain system can be affected after breast cancer, especially if nodes are removed: I only had three so not too much of a risk although almost 11 years on, my right upper arm is slightly larger. I did the exercises regularly for quite a while but my oncologist said I wasn’t much of a risk being fit, slim and sporty. Hm. I know someone who did develop lymphoedema nine months later. It’s recommended to avoid beef, pork, milk [soya instead] and do regularly exercise. Some sports are not ideal for example, repetitive action of tennis or golf… Nothing tightfitting on affected arm [clothes, injections or blood pressure tests], avoid lifting anything heavy or overdo any exercise with that arm. Three months after my op I found more fluid under right armpit, the lymphoedema nurse said that was OK… I can live with it.

Leading A Normal Life

My oncologist said to get on with life as usual during my treatment, which I did although had to avoid being in the sun which suspended some activities.

Exercise is essential for helping with recovery: a BBC article said that cancer patients should have at least 2½ hours’ exercise a week. I was lucky that my energy levels remained remarkably high throughout: I continued to walk the dog twice a day most of the time, swam 100 m in summer and went Scottish dancing.

“Do you think about cancer all the time?” No, hardly at all. I had cancer, it was being dealt with and life went on. Someone else asked: “At times you must feel very down and desperate, it’s all so unfair” Surprisingly, I never felt really down ordesperate, but agree it was unfair! A positive attitude/being active is/are very important. I never once entertained the idea that I would die 😊

Final Outcome

The final biopsy of my ex-boob showed NO MALIGNANCY: the best possible outcome I could have asked for. The chemo well and truly zapped the tumour as it had completely disappeared [only happens in 15% of cases], although who knew whether a nasty cell might be lurking, hence my option for a mastectomy. Eleven years on, I feel I’m safe! So have faith, stay positive and you, too, can look forward to the rest of your LIFE with optimism!

If anyone would like to talk to me, am happy to do so: 6 7929 0900

2012, slightly revised Nov 2022