This is not about Jennifer Saunders but it is about a BBC prog. so hope another R4 listener might be able to help me. Did other people hear the excellent play on Sat afternoon ("Goodbye") and if so please can someone direct me to the place on this new website where I might find comments on it - and on other subjects that used to be listed under "current, topical issues" ...........or something like that? Many thanks.
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I know these forums are an opportunity for us to have a moan- which we certainly all need- but reading the comments here is quite a depressing business. It seems that whatever is said will offend/ upset some one whether it is someone trying to say something encouraging , whether it is a pessimistic remark, whether someone has trivialised our ' suffering" , if someone says we look well, if someone says we look poorly .............really they are on a hiding to nothing if they speak at all. There are actually worse things in the world than having breast cancer- think about it............... Maybe some of the people who say the 'wrong' things have troubles and problems of their own that we know nothing of- or they have gone through all kinds of traumas in the past. Sometimes I just think we should lighten up a bit and not take ourselves so seriously. My own bête noir is being mistaken for a man because my hair has never re- grown properly; sometimes I feel really sorry for myself when this happens and want to find a suitable put- down for the person concerned...............but then I realise that they are often more embarrassed or upset than I am - and that very few people are deliberately unkind, they really aren't
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This is a really interesting thread: I repeat my previously stated opinion that this hair problem is very under- reported and is much more common than the oncologists are prepared to admit.
My own onc told me it was "very rare" when I know for a fact that he' himself has seen at least 2 other people in the last year or so, with a worse problem than me- who I know about through these forums!
I am sure that Taxotere is the main culprit - and that the aromatose inhibitors exacerbate the problem, rather than cause it.
It is dificult to say what would have been my reaction if I had been told before chemo that my hair might not re-grow. I don't think any of us would have refused treatment because of it; at that stage I guess it wouldn't have seemed such a major problem - we had other things to concern us that were more pressing; but now............I just wished I had been warned & encouraged to try the cold cap. We were warned about so many other side effects - but were always told that our hair loss would only be temprorary!
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Hi Hazel- thanks for your comment and response.
I have been a lot luckier than some folk with Arimidex as my hot flushes have not been horrendous and they have decreased with time (does that indicate that the drug is no longer working so effectively?) I do think that all our side effects and reactions tend to be played down by the oncologists- I assume because the treatmrnt we receive is pretty 'broad -brush' and they don't have any suggestions if we 're not happy other than to suggest we change to an alteranitve drug- which may well bring other probs..........
I know we are all grateful for the treatment we have received (horrendous though it was) as we have to beleive that it will save us from a premauture death - but it is hard to put the months/years of treatment behind us and get on with our lives when side effects of daily drug-taking mean that we are still having to see hospital staff and our GPs more than we would like.
My own problem has been very poor hair growth after Taxotere- a problem shared by many more people than the oncs will acknowledge. It is routinely played down,if it is mentioned at all, prior to chemotherapy and its never mentioned that oestrogen-suppressing drugs will also inhibit hair re-growth in older women.
Even BCC's own web site says that "prolonged hair loss has been reported in a very small number of cases with some (chemotherapy) drugs" Shame more people didn't report it then, is my response to that! There is certianly plenty of anectodal information on the subject & many comments about poor hair re-growth on these forums, over recent years.
I AM sorry about your on-going problems with Letrazole- as you say, it is one of the gold star drugs but your side effects sound horrid.
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After nearly 4 years on Arimidex - and with my Oncologist's agreement (if not his blessing), I recently came off Arimidex for a period of 3 months to see if that would help with my worsening arthritic problems.
It was a long shot and actually didn't help the arthritis but the onc did tell me that there had been NO research on the efficacy or otherwise of taking Arimidex beyond 5 years - and even that time span was somewhat arbitrary. The studies that had been done have shown that taking it for 3 years produces better outcomes than taking it for only 1 or 2, but above the 3 year figure, there were no studies as to whether 4 or 5 or 6 years was the magic number.
I am now back on my daily dose of Arimidex (and the hot flushes and night sweats have returned!) but I certainly won't be worrying about givng it up in Jan of 2014- roll on the day! I'm 70 now and just want to get on with making the most of life , putting BC behind me and like Road Runner, will be only too pleased to be finally out of treatment. i really don't look on Arimidex as a safety net any more- just a pill that I'd rather not take.
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No - I don't think it's worth a try!
If your hair is anything like mine, there are areas, especially at the front on the crown where the hair is very sparse; if this product works at all, I think it will only accelerate growth where there is already hair- and my/our problem is actually that only a percentsage of our hair has re-grown.
If it's any encouragement, I do think my hair has thickened a little over the last 2 years (I'm now 4 years post chemo but still on the dreaded Arimidex) so I don't think we should give up. Regular cutting does help - short , thin hair is definitely a better look than long and fine.
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Hi libsue- as you can see , there are lots of us out here who have thin sparse hair and feel depressed and sad over the loss of our ‘former glory’.
Like Tors, I now hate to see photos of myself – but most of all I hate the photos of the former Kate Middleton. Her hair is obscene - is it real?!
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Hi evryone- this post is getting rather technical isn't it?!
I think the points keyfeatures made in her 1st post chime with a lot of my own thoughts; screening has a down side - so does treatment for BC - there are risks involved in surgery, chemotherapy, and rads- not to mention the pyschological dimension which is so often overlooked. (eg the blunderbuss effect of bombarding our bodies with cell- destroying poisons thro chemotherapy ..... and all its attendant miseries; surely chemo will become more targetted as knowledge increases?)
Flori 35 - your situation sounds very like that of my own daughter who was dx after finding a lump in her neck . There is no history of BC in our family either so we were also at low risk - it's just a rotten co-incidence that we were both diagnosed in a 5 year period- she at 32 and me at 64. Like you, she was found to have well established BC - but screening would not have helped her or you as mammography on younger, denser breast tissue is notoriously unreliable. I beleive that the main reason breast screening continues in its present form is because there would be such a public outcry if it was suggested that it ought to be more targetted and restricted and - as keyfeatures says, with ultrasound and physical examinations for those at high risk.
Unfortunately, as my daughter and you have discoveredd there are always going to be people who don't fit the usual pattern - that why ongoing research is so important. That brings me back to my previous point: mega bucks have been spent on mass screening for many years now- and has that money really been best spent?
Keyfeatures also makes the point that women should continue to be offered routine mammograms, but also be told - in good time- of the potential downsides- ie their consent should be informed. OK if you don't want to know all this - that's a perfectly valid response - though not one I share, but we all know that in the past screening was seen as uniquely beneficial - and the potential for over treament was never mentioned. (though my husband was certainly told all the pros and the cons of prostate screening!)
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Another point of view?
"Getting the establishment with its vested interests to accept that the evidence for over- diagnosis is irrefutable. The evidence that examining well women without a family history of breast cancer saves lives, is poor, and based on old data that does not take into account the improved outcomes for treatment The money would be much better spent on further improving treatment. Sadly it will probably take another 5 years before we stop frightening healthy wopmen and abandon this expensive harmful screening.
Most women find mammography stressful and unpleasant. Even among those who receive a normal result there is an emotional cost. Those who are recalled further examination or biopsy but found to not have cancer, are caused even further distress for nothing. The ethics of making 4,000 healthy women seriously ill each year to possibly prolong the lives of 1,300 other women is very questionable. I have not attended - and will not be attending for screening. I will not subscibe to the superstition that my refusal puts me more at risk of disease"
These are not my words- they are those of a doctor writing in today's Times.....but i have a lot of sympathy with what she is saying. The current media coverage re the efficacy of screening and the ethical aspect of overtreatment is not new: there have been many informed voices raised on this issues for years- but the suggestion that the NHS should cut back on breast screening - or be more selective in who is screened, is such a hot potato that it may well be years beofre there is a radical re evaluation. - meanwhile thousands upon thousands of pounds have been spent, which I also believe could have been better used in research and treatment.
Despite my own BC having been detected by routine mmammography I remain unconvinced that I would not have soon presented with other symptoms and would have sought treatment. In years to come, I think we shall look back with hororor that so many women lost their breasts and many more had to face anxiety and stress - when there was no test to determine whose DCIS would go on to become invasive BC and whose wouldn't .
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Thanks for all your comments- which raise many points that I had thought about myself - as well as others.
I have my own views re follow- ups, hence my particular interest in the newspaper article. After the usual 9 months plus of continuous treatment I actually did feel as if I'd been cast adrift when I was told that my next appointment would not be for 8 months. At that stage I would really have welcomed seeing someone in 3 months time- and then after that I wouldn't have been bothered how long it was before my next visit.
I agree strongly with what both moorcow and chascat mentioned: I know it is really rare for a recurrence/secondaries etc to be picked up at these yearly appointments. I would go further and say that i think the appointments are pretty pointless. We patients are the ones who will first spot any changes in our bodies and will be onto our BCN or GP pretty smartly if we are worried; we wouldn't wait until our next hospital appointment was due, would we?
I have taken this up with my onc and he agrees with me- but that's the system! I think his professional time and the money paid to the multitude of outpatient nursing staff, could be better employed elsewhere!
Sara, I did actually wonder if all those extra appointments were maybe a factor in causing the depression- just too many anxiety-raising appointments!
Liz - I could quite see why you would be seen more frequently if you are on a trial (and Herceptin) but I agree with you that treatment patterns do seem to vary from region to region and hospital to hospital.
Morrcow- I felt pretty fed-up at the end of MY treatment and was lucky anough to get referred to a specialist nurse at the local hospice, as it was thought I was developing lympodoema. This turned out to be a false alarm but the nurse was absolutely wonderful; I saw her 3 or 4 times and she restored my faith in the nursing profession (I trained myself many years ago and was quite horrified by the attitude and lack of TLC in some of the nurses I had encountered......)
Hazelmary- I am interested in your response as it seems as if you have found your more frequent appointments a source of reassurance - and not stressful- as some people seem to. I have friends who have had private treatment and they have discharged themselves after 5 years as they just wanted to get free of all things BC - if they could!
Keyfeatures - I agree with you that I wanted to get on with my "proper" life asap- but I did feel the lack of consultant support in those first post- treatment months: this rather surprised me, as I had originally really hated the way that the hospital had taken over my life- I guess in the end I got a bit hospital- dependant!
Sandytoes- - my onc also told me that scans were only done post-treatment if people had specific symptoms- otherwise it was a waste of time. I wonder why this person in the article had them....and blood tests?
I do think the insurance companies are not innocent bystanders in all of this: someone is making money somewhere! I have had private treatment myself in the past thro BUPA (not for BC) and on one occasion when I was considering SELF-funding for a very minor op , the surgeon actually told me that the sum he had mentioned would be considerably less if I was NOT going through an insurance company!
Thanks again for all your comments- aren't these forums interesting? (though they were even better before all the 'improvements"!)
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Did anyone else see the article in The Times on Saturday by Gail Rolfe ?
She was actually talking about the depression that hit her after all her active treatment for BC was finished but what really struck me was how different her follow-up appointment schedule was as a private patient, from my own- and I think, most people's, in the NHS.
After her active treatment finished she was seen every three months for 3 years; now, 3 years after finishing chemotherapy, she is being seen 6-monthly. She also mentions blood tests, ultra sounds as well as mamomgrams - after her treatment finished. Her BC grade and stage & treatment sounded very similar to my own ........but my follow up was very different.
From the last day of my rads. until my first follow-on appointment, was 8 months- and therafter I was just seen annually (either by the oncolgy team or the surgical) with mamos every 18 months.
I understood that such a timetable was complying with NICE guidelines- so why would a private patient be seen so much more frequently? I am surpised that the insurance companies would go along with this..........? I'd be interested to hear what others think
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Hi Nanabarb- oh,what a familiar story! Although failure of hair to regrow is not the norm, there are in fact quite a lot of us out there. I'm so sorry you have had to join us.
There are 3 main factors as far as i can see
ii) Taking Arimidex
iii) Being 'older'- ie over 60
Maybe wearing the cold cap would possibly have helped but I'm not sure on that
I wore a wig for two and a half years and am now 4 years post treatment. My hair has continued to grow a LITTLE more as time has passed but there is still a lot of daylight to be seen between the strands.
A couple of tips:
i) Don't waste your time and money on so -called baldness cures, lotions and potions.
ii) Once you have some hair, find a good hairdresser and have it trimmed and shaped regularly. I now have mine cut very short every 8 weeks and I know this has helped.
iii) Unless you really can't bear it, DO wear a wig- it is always better than the alternatives - in my view.(and it doesn't tell everyone that you have cancer - which is important to me) My wig did a lot for my confidence because i knew it looked OK.
Now- with my own thin hair, just when i think it doesn't look TOO bad i see a photograph of myself and realize i am deluding myself. No matter how kind people are "it's really growing" etc etc --I KNOW I am semi- bald. I know some of my friends really think I would have been better to continue to wear my wig which did look pretty good. It was an inexpensive NHS one trimmed by a Trevor Sorbie trained stylist. Maybe i'll get it out agani.............
PS This week I have seen my Onc specifically to discuss coming off Arimidex early - ie after 4 years rather then 5. This is largely because of the drug's effect on my arthritic joints but I'm also fed up with hot flushes and I'm also VERY fed up with my hair. The Onc was sympathetic and, as I expected, said the decision must be mine. He didn't tell me I was being stoopid- and he DID say that quality of life is important and at my age(70) I have to weigh the risk of BC recurrence or secondaries agaimst other factors. I have decided to go with my instinct and am coming off Arimidex for a two month trial - initially.
Obviously that is MY decision and MY cirumstances- I would never presume to advise anyone else on this- but with or without aromatose inhibitors our BC might still recurr - we are never 'cured', are we?.
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Thank you Puffy White Clouds and Lily for your helpful comments. I will certainly check up re the Centre of Excellence thing- i agree that it is probably applied to the larger hospitals who are doing research and trials etc - though I wasn't involved in any myself.
I guess the reason that I don't react very well to the title is because being a "Centre of Excellence" was trotted out to me as an excuse for poor nursing practice when I made a complaint about poor practice. ie "this is a C of E and therefore very busy and with large numbers of patients. We are sorry if you are not happy (about the lack of privacy and long waiting times and people being treated like numbers rather than individuals) but it is not possible HERE, to offer the kind of individual attention and privacy that you may have seen in other, smaller units" That really is the gist of what I was told by a modern matron (whatever that means!) As a nurse myself I was a bit hacked off to hear that, as you can imagine.
I agree with you Lily- would be good to see the league table of BC survival!
W P Clouds- thanks for the advice re asking to see my consultant in person. 2 years ago, wanting to ensure that I saw him in person, I actually changed my appointment date when I found out that he was to be on holiday that week. (I rang his secretary to check) ) I asked her to note down that I really wanted to see Dr. B - but when I got to the clinic I was still scheduled to see the registrar. I asked if I could change and this was arranged - but I had to wait until the very end of a 3 hour clinic for the privilege!
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Seems a bit of an obvious question but what is the definition of a "Centre of Excellence"? Are most BC patients being treated in hospitals that are NOT excellent?
I had my treatment in Leicester (which someone has said is a C of E ) Don't want to be churlish but can't say that my experience there was that special. There have certainly been no blood tests or scans and only 18 monthly mammos since active treatment finished. Onc apps are bi-annual, alternating with surgical apps but I have not seen my own surgeon since my op in 2008 and have only seen a registrar at onc appointments.
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Thanks everyone for your interesting comments - and especially for yours "Justme" - you have given me encouragement that my onc may say the same when I see him in a fortnight's time.
I had a WLA and total clearance (one affected node) then 3 FEC and 3 Tax plus rads: my BC was Grade 3 Stage 3 - I don't know how much difference all these details make - I would like to think each patient is really considered as an individual but supsect that it is usually 'one size fits all' ....... unless one raises a query. I just want an answer to my original question:why 5 years? Why not 4 or 6 ....or 8?
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I don't actually think my side effects have become worse with time - i'm just older and more fed-up with them. I think the flushes were more frequent at first than they are now - but i still get them and would prefer not to; likewise I would prefer not to have increasing arthritic pain and I would prefer my hair to regrow properly. If stopping Arimidex would bring these things to pass, I'd like to stop it asap.Most of all I'd like someone with the necessary knowledge to explain to me why I might be foolish to do this......and to back their advice with some actual facts and figures.
On the papers published on the interent it is very difficult to find your way through the 'medicalese' but the 5 year figure seems to be the benchmark; I just wonder why, and if it's proven that losing a year would actually make a difference?
Is it an arbitary figure - why wouldn't it vary from person to person?
My onc told me after i finished 'active' treatment that my prognosis had improved statistically but that from on in there was no way of knowing when/if metasteses might appear - no test that could be done, only statistical chances - so on what research finding do they decide on Tamoxifen/Arimiidex/Femara for 5 years?
Are there figures published showing people who have come off aromatose inhoibitors after x number of years who have then gone on to get secondaries - and are there figures for those who have still been on the drug when they developed secondaries anyway? Are there tests to say who is most at risk-is it still all to do with one's primary prognosis and statistical chances calculated on one of the computer indeces?
Questions, Questions, Questions .......and after I've seen my onc in mid-Oct will I be any the wiser?
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Clearly practice varies quite widely. In Leics we are only seen for 5 years and the hospital visits are annual, alternating between the oncology and the surgical teams. As far as I can see this is standard practice for everyone here unless they develop meets. I have already given my views re the mammo schedul here - every 18 months for 5 years post diagnosis & not linked in with the hopsital follow up appointments
My onc told me that HE would prefer his pts to have annual mammos but that that isn not the policy here. As with SIGN, RevCat I think the NICE standard is 12-24 months
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Now there's a comment to start some controversy!
I have a lot of symathy with your point of view but it ain't a popular one on the forums!
I note the results of the latest 'research' published only yesterday, on the efficacy of routine mammography & which suuports the current thinking. I remain sceptical - despite my own BC havindg been 'picked' up by a routine mammo.
I feel real concern about the untold numbers of women with DCIS who have been subjected to the whole BC treatment gammut- .....and for whom it might all have been unnecessary.
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In Leicestershire, BC patients get mammos very 18months for the first 5 years post treament.(I'm not sure what happens after that)
Unfortunately the mammo schedule is not syncronised with the yearly hospital follow-up appointments. So in my own case, I had a mammo in March 2011 and a consultant appointment in August 2011; then nothing until my consultant appointment last month ... ....and now a mammo appointment next week : doesn't seem a very clever system to me.....but I'm only the patient....!
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Thank you all for your replies & helpful comments. I don't want to act foolishly and in the end I guess I will accept the advice of my Oncologist when I eventually see him - as I feel he has always been straight with me in the past. It just seems from what I have heard and read that the 5 year figure is somewhat arbitrary.....and indeed why are some people recommended to continue with Arimidex even longer?
My BC was Grade 3,Stage 3 and hormone postive ++ and of course I am grateful that it has been sucessfully treated and so far (4 years from diagnosis) there are no signs of metasteses. Hopefully I will not die from it (irreverent thought- better BC than dementia i guess) - but on the other hand, the side effects of treatment can really impact on one's quality of life can't they?
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