I’m 3 and half years down the line from initial diagnosis. Mastectomy, node clearance, radiotherapy, chemo, targeted treatment, hormone treatment, bisphosphonates, etc etc. Lymphoedema, blood clots etc etc. Never ending. YET…all the nice leaflets and web sites say… Ask your health care team about coping with side effects… You know the ones, the never ending pain from letrozole, now trying anastrazole, the fatigue, the neuropathy etc etc. So every time you have an appt you mention them… And every time it’s the same… Pain management year long wait, try exercise, try mindfulness, drugs can’t help. Well if this is all in thousands, potentially millions of women’s heads across the world then pity help us. I go swimming and have done for a while… Pain increases and I am not worth a button with the fatigue so that’s rest of day ruined but hey I can do my mindfulness and focus on my body at that moment to “ground me” and then listen to waves crashing…yep I’m still in pain but never mind…it’s “helping”, not. Why are health professionals so dismissive? They are so desperate to give us these drugs and we are desperate to have them. They reel off the side effects and that’s it. Deal with it. I felt so well despite finding a tumour. I completely accept six feet above is better than six feet under but more needs to be done to actually help us rather than give advice which for a lot of women does absolutely nothing. Please don’t anyone take this the wrong way but there’s so much emphasis on having the perfect death, it seems that those who are very fortunately not at a terminal stage have been forgotten about.
I love this. It made me smile although these are the things that stop me smiling too often. I have never felt so achey tired and haggered since my diagnosis two and a half years ago. I too felt fab before it was discovered. How can life deteriate so much through the treatments to let you survive?? But hey ho I am cancer free now and the anastrazole will hopefully keep me that way so all the side effects are worth it !!! I’ve had the ovaries out because I’m brca2 so it’s a job to tell what’s normal menopause and what’s side effects but be grateful we are told. I’m sick of hearing how great hrt is and how it gives the normal woman her life back when it’s not an option for me and as for those sprietly 70 year old women out there in lycra on their racing bikes!!! Thanks for cheering us up. You are not alone. Others also feel the same XXX. We are only human and it’s only others like you that will sympathise because we genuinely feel the same. We shall march on or at least hobble x
I went through the menopause artificially by having a total hysterectomy over 15 years ago, non cancer related issue. I had nothing more than occasional hot flashes. I ran half marathons, I walked a half marathon during my radiotherapy having just finished chemo. Then came the aromatase inhibitor…does the medical world really believe that we “imagine” this pain to be worse than they think it is? Liz o’Riordan would certainly tell them like it is but it’s galling that it’s only because she has “credibility”. Are we really avoiding getting down on the floor to play with our grandkids because our side effects aren’t all that bad? In that case the pharmaceutical companies must tell blatant lies because god knows they are the ones who document the side effects. I honestly think that some of these medics are waiting on another neuron to have a synapse if they think imagining fluffy clouds or exercise does much in reality. Yes undoubtedly it can lift your mind, release those happy endorphins etc but I obviously need more like an oil tanker of them because I can be very happy while being in pain. I can be with my family and feel happiness, love, fuzzy wuzzy doo dah stuff, doesn’t stop my body saying bloody hell I’m in agony.
Today my GP kindly told me that the medical field agree that pain medication doesn’t work for A.I. pain… Thanks, I’ll go back to my clouds for 7 years then…
Letrozole was developed way back in 1986, used regularly from 1996. 25 years of women having to put up with pain or risk a recurrence by stopping them.
From Breast cancer. Org web site (2021)
'Research has shown that about 52% of women prescribed tamoxifen and 47% of women prescribed Arimidex to reduce the risk of recurrence after breast cancer surgery stop taking the medicine early.
Research suggests that many women stop taking hormonal therapy early because of side effects.'. (Note Arimidex is also known as Anastrazole)
Shocking statistics that reflect exactly what our pain is. It’s the kind of pain that forces us to choose to put our life at potential risk. Yep it’s in our head…
Hi sunbeam
I was with you all the way till your last comment. Believe me, Stage 4 cancer brings no better support than primary cancer. I was diagnosed last March with triple negative Stage 4 breast cancer (a tumour in my eye socket of all places) and skin mets. The only contact I have had with my GP has been a delayed email response to my request to know their protocols for working with stage 4 cancer patients as I had had no contact with a GP since diagnosis. I was told that this was because it wasn’t a “new diagnosis”. So primary breast cancer three years before precludes me from needing any kind of support?? They just leave me to die once the hospital can’t help with the physical stuff? Who deals with the emotional stuff? That is probably half of the problem.
I do believe that the pandemic has changed how GPs perceive their patients. The government’s restructuring of the NHS and introducing the business model has also contributed. We can be fobbed off with a phone call, if the receptionist decides we warrant one. After a lot of delays, rejections, excuses over 9 months, I was asked by text to submit photographs of my swollen eyelid and Community Ophthalmology sent me a letter saying they had reviewed the pictures and decided no further action was required. I received the letter after I’d self referred myself to Oncology and all the wheels were in motion to determine if the tumour was cancer or not. Had I not taken matters into my own hands, I’d be living relatively comfortably in ignorance of the fact that I have an incurable disease with low expectations of recovery because my GP thought, from photos, that all was ok, despite knowing i was a high-risk CEV patient. Cancer seems to be the one disease where GPs wash their hands of you - the hospital deals with you. My GP actually said with no embarrassment that she had no experience of chemotherapy and its side effects when I was in despair after chemo. In other words, get lost. Now she tells me I don’t qualify for the health checks GPs are PAID to do as extras, because it’s not a new diagnosis. Actually, it is a new diagnosis. Breast - eye?? Like you, I despair.
I no longer go through my GP. They are careless - I was called for a live shingles vaccination recently, something too dangerous when you are on chemo, as I am for the rest of my life. I didn’t bother to ring to ask if I could discuss this, I just went straight to the hospital breast care nurses and, with one email, I had the right (inert) vaccination at the right time (between treatment cycles). But when I went for the vaccination, not one question was asked about how I was, how was I coping, was there anything I needed? Am I wrong to feel beyond angry but also despairing? I feel invisible and worthless, to be honest, if I allow myself to dwell on it. All I need is one gentle enquiry to prove they care.
Sorry for the rant. I do empathise with you (I haven’t the energy to get from changing room to pool right now) but we’re ALL forgotten about. There are no perks for what you call ‘the terminal stage’ but what we call Secondary or Stage 4, looking on the brighter side.
I hope you find ways to ease your pain - I have pregabalin for neuropthic pain. It’s not as good as amitripyline which I can’t have, but it’s very good for stress and anxiety! Prescribed by phone of course! Take care,
Jan x
Yes absolutely we should hope that things will improve for us, now and in the future. However this has been going on for 25 years of women using these types of drugs. Having did an internet trawl for new drug development to deal with our type of pain… there isn’t any. Of course we value every treatment, every medication, every surgery. I do question why when every protocol in the NHS refers to person centred care with the person being encouraged to direct their own care that this is as meaningless as the previous throwaway of holistic care.
Don’t hand us leaflets telling us our medical people both in hospital and community will be ready to help with every side effect. Web sites also stress that help is there. It’s not always there.
I was diagnosed stage 2B, at that early stage I was told by my surgeon it’s treatable not curable. Maggie’s also told me this. I have a long ago background in midwifery so I’m pretty clued up on health care. My own instinct to retain sanity is to never think it’s gone away, there are dormant cells that will inevitably awake, it’s just when. I’ve seen too many women at the hospital thinking after all the treatment they’re cured. I’ve seen the women who then had a recurrence. For hormone driven cancer it’s not a case of recurrence is most likely within 5 years, its risk is after 5 years and stretches into the future. When I did my predict score I had a 50% chance of dying from cancer in 15 years. Now that level of realism isn’t explained to us either. It’s not all doom and gloom but we deserve the respect of doctors and nurses telling us how it really is. You get told about side effects, well why not put it out at the same time exactly what can be done if you get any. I probably would still take every drug. Don’t even ask about my year on neratinib, suffice to say I never thought I would clean a bathroom floor at 3 in the morning so often…
However taking a drug is a very individual thing. After all it’s 3 and a half years of mine in pain. Would I have chosen those years to be without pain and not taken them had I realised there is no help with that pain? Would I rather those years were the most enjoyable ones I could have? 7 years ahead knowing little will change, would I rather have 10 years of having my body feeling a lot better? Honesty from the start gives us the information we need to make a fully informed choice. Have a great day everyone.
Hi Sunbeam
I hear your frustration with the so called Professionals and I whole heartedly agree. They offer all those platitudes but don’t deliver when it’s needed most. Have you thought of asking your Consultant or whoever oversees your Treatment the obvious question ie “Have you personally been on this drug and experienced the side effects? No! That explains exactly why you talk such nonsence! Absolutely NONE of your suggestions help so rather than offering patients platitudes, feed back to the Producers the patient’s horrendous side effects and maybe then things will change.”
Only when Producers of Drugs are continually receiving complaints from Consultants about the horrendous side effects will they attempt to resolve the problem.
Silver