Breast Cancer Now Forum

I’m sorry to hear you’ve already experienced Guillain-Barré Syndrome. It’s a swine. My brother-in-law developed it when he was 45. Fortunately from him, his wife, my sister is a GP, so she twigged straight off. Overnight he became paralysed from the neck down, but luckily he didn’t lose his speech, or require ventilation as was expected. He eventually made a fairly good recovery after a year, so he was able to walk awkwardly, but he never regained strength or coordination in his hands. He’s had a lot of continuing pain, and now he’s got the chronic form (CIDP - chronic inflammatory demyelinating polyradiculoneuritis is its posh name!) He has been prominent in the GBS association, publicising the condition and influencing medical practice. Although you’ve not had good experience with your oncology service, you should be able to find better. One thing about cancer generally, and breast cancer in particular, is that treatment is well funded and extensively researched, standards and guidelines are established. The same cannot be said for GBS/CIDP (or indeed most of the less common neurological conditions). You haven’t said whether you’re still having treatment for GBS, which would need to be taken into account in cancer treatment. Some people do make a full recovery from GBS. I hope you are one of those. It’s so variable; 5% still die in the early stages, and so many have some disability. However, no matter how frightening the word “cancer” may seem, there’s a lot to be said for having an ordinary condition that everyone had heard of, with vast networks of support, NHS “queue jumping” over every other condition, not needing to find the few doctors who know anything about it, plentiful information. With GBS/CIDP you could find yourself having to educate your GP, or even local neurologist (who’s a stroke specialist). So you should be able to find alternative treatment centres for cancer without difficulty, in contrast to finding an expert in anything rare and neurological. ... View more

I’ve refused Letrozole because I found stopping HRT so miserable and the idea of increasing those effects too much. But I’m 66, an early tumour, with a low incidence of recurrence. I’m sure I’d think differently if I were 20 years younger, with a longer life expectancy, cancer or not. For me, stopping HRT meant ageing 10 years in 10 weeks, and I prefer to run a small risk of recurrence rather than accept the certainty of poor quality of life throughout the years that remain to me, with the increased risk of dying from the diseases I’ve always thought would appear on my death certificate. ... View more

Dermatomysitis is one of those conditions that prompts doctors to look for a hidden cancer- rather than cancer turning up first, as in your case. Be sure to find a specialist who knows about it; adequate treatment for common cancers is widely available, but dermatomositis is a Cinderella by comparison. My mother had a particularly aggressive polymyositis (that is, no skin involvement) without an underlying tumour, and I recently checked out how much information was on the professional web; not very much. On the positive side, you have been diagnosed, presumably fairly early. My mother’s symptoms were regarded as hysterical (menopausal widow!) for years then wrongly diagnosed as an untreatable form of muscular dystrophy (to be inherited by 50% of her children) for more than a year, so permanent damage to muscles was extensive by the time treatment began, but even so, she lived 18 years longer than she would have untreated. ... View more

Not everyone experiences side-effects, but withdrawal of HRT in May 2018, on diagnosis has been so nasty for me, that I have no desire to accept letrozole. At 66, I don’t expect to live long enough to have a life afterwards especially as the risks of all the conditions I anticipated appearing on my death certificate are increased by the drug. It’s easy for me, as I only had a tiny tumour, negative nodes, Grade I. Admittedly HER2 +, but even so, very limited benefit from longer, nastier treatment. For younger folk, the pros and cons weigh up differently; for me, the chances of dying from non cancer conditions seemed higher with more treatment than without. ... View more

What’s The Haven? I thought those were places for examining women and children for recent sexual assault (at least the facility I attended to learn about evaluating rape in children had that name, and those three days weren’t comfortable at all, so I wouldn’t want to return. ) ... View more

I hate my quality of life post-HRT! I took it for years, from peri menopause, primarily to reduce severe migraines (strongly hormone dependent) but now I realise just what benefits it had. Just before screening detected my mini mutant, I’d agreed with GP I could continue HRT as long as I attended mammogram screening. A few weeks later, being a good citizen, I turned up at the Portakabin in Sainsbury’s car park for the ritual breast squashing- guess what? I knew as soon as I saw the scan when I was summoned for more investigation; that almost impalpable parasite I couldn’t even find when I did a careful self-examination. I knew already it was unlikely to kill me before my time was up, but also that I’d have to stop HRT. I’d feel differently if I were younger or had a more advanced tumour, or a more deadly cancer, but the abrupt “castration” of HRT withdrawal has been miserable (in a heatwave, too). UTIs, bowel malfunction, sweats, headaches, sore skin, brain not working, poor sleep. I’ve long had a semi-humorous theory we’re not well designed to live much past 50 - teeth are the giveaway, as we only have two sets - so I realise HRT comes in the same category as reading glasses, hair colouring, exercise classes for “mature” adults: artificial adjuncts to quality of life for those once regarded as “old”, but now expected to continue working and contributing to the economy-,and above all, not to become a burden to society, the NHS, and to continue to supporting our adult children financially. It seems ironic to me, that being now 66, I’m classified as in the oldest (final) age group when it comes to health statistics, although pension age is now set later. If you are in a different, it is implied close to the grave, category for health, it seems unjust to enforce employment. In some jobs, that might work, but I wouldn’t want someone of my age performing microsurgery on my brain if they’d just stopped HRT. As far as I’m concerned, hormones are more fundamental than breasts, which are only used for a few years of life, otherwise just decoration, hidden from sight. For me, letrozole would be half a gender change, and I don’t think I could regard myself as a woman while I took it. But that’s just me, with a tiny early tumour I don’t expect to figure on my death certificate, and (almost) wishing routine mammography had been 3 years later, so I could have carried on with HRT till then, or until I’d found a lump, or had symptoms. I think it must be different for those who have sought treatment, rather than being grabbed off the street, in apparently good health, and only become unwell as a result of treatment. I try not to overestimate the evidence suggesting that breast screening is not a “oood thing”.(more substantial for prostate cancer amongst others) but I intend to decline treatments which may only reduce by a minimal amount the risk of recurrence without improving my life expectancy overall, but with a near certainty of significant impairment of my quality of life. ... View more

It’s almost never one thing that “causes” cancer (asbestos and mesothelioma are exceptional). The worst feature of my recent life (screening detected tiny cancer, surgery and RT) has been HRT withdrawal, after many years. Who knows what factors came together to allow these mutant cells to grow? I didn’t have babies till I was 34 (bad) but I breastfed for years (good), smoked heavily passively from conception, and for a few years actively (bad), but gave up long ago (good). There are so many factors I can’t change- it would be ridiculous to blame my long-dead mother now because she smoked, or myself for not having babies earlier (the adverse effects of motherhood without a good father for them outweigh any reduced breast cancer risk, not only for me). Most of us have been fatter than ideal at some stage in our lives, and haven’t been as active as was good for us- we are even told “sitting is the new smoking!”, even if you work out to recommended levels and beyond. Nobody can ever know what combination of factors came together to cause their breast cancer, or whether, with small changes, they’d have had another disease; nuns/virgins are prone to cancer of the womb, but sexual experience risks cervical cancer... And so, I’m not going to nag my daughter to have a baby before she’s 30, much as I long for grandchildren, and I’ll even try to bite my tongue if she doesn’t breastfeed for six months minimum. I don’t have to worry about her being overweight or a couch potato, which carry so many risks to health, for which I am thankful. ... View more

I would hope the oncologist would always have offered you a choice, but indicated his/her preference, with reasons. I think SOME health professionals in oncology assume everyone will want every treatment - after all some women are completely freaked by the diagnosis, even if their tumour has a good prognosis. I imagine, that priorities vary according to age and stage of family life. If I’d been 20 years younger, with dependent children, I’d have considered treatment options differently (but on the other hand, as main breadwinner, I would have had to think about sick leave, the mortgage not yet paid off, and the machinations of my employer (NHS) to sack me “legally”, without pension; I’ve seen it so often! “I’ve found HRT withdrawal (in a heatwave) so unpleasant that I will refuse letrozole. I said as much to the oncologist before starting RT, but she doesn’t seem to have taken it in. At 66, I am more concerned about the drug increasing the risks of all the things we die of in my family, before I reach the end of 5 years. “Cancer is not the only disease!” I have always joked that my family don’t need to worry about Alzheimer’s, because we never live that long (exaggeration, and some folk get it early) but not everyone inherits the genes for long life - even if the current trend in public health/NHS insinuates “bad behaviour” (aka “lifestyle”) is the only deadly sin. Not being posh enough to have a lifestyle, but just a life, I refuse to be intimidated. Most people make the best choices for their cancer treatment in the light of knowledge at that time; and NO point in beating yourself up later, if things don’t turn out as expected. ... View more