Thing is, my tiny tumour was picked up by routine mammogram before I could ever have found it. In its position, I wouldn’t have known about it for another year or so they thought, by which time it could have done more damage.
But I take your point about taking control ourselves. I just wish there could be a happy medium - us as an active part in our treatment! I feel lucky with my oncologist, but I saw him only once and have no contact with him any more - only with my surgeon and then only after I’ve run the gauntlet of his protective BC nurses!
You’re right that we need to have some sort of insurance, but I wouldn’t like it to be like the American system which has many flaws. Some sort of compromise is needed now as more treatments are available and cost so much. In NZ you have to pay to see a GP - not a huge amount but it stops people failing to turn up! In Wales we don’t pay for prescriptions which is stupid I think.
I really don’t like the way things are going in NHS to save money - NICE deciding on what is available to us for instance. I too want individual care - not what’s cost effective for the country at large.
I have never understood why people assume that private health care means going American when clearly that would never be contemplated. The whole of Europe have insurance based schemes, ALL of which produce better outcomes than our prehistoric socialist model. As for NICE some sort of benchmark of spending will always be needed in even the most generously funded schemes.
I’m not so confident of the American model never being contemplated! Other European countries have long been apparently ‘studied’ and I’m sure some things could have been changed by now, but I’m afraid our government is presently far too much in thrall to lobbying and private interests. Still, we’d best not go any further about that on this thread!
I’m grateful to everyone for their input and wish you all as healthy a new year as is humanly possible…good luck everyone…xx
I’ve just found I have Covid this New Year!
Not bad so far - and it’s a million times better than BC which was last year’s Xmas present!!!
Good luck…x
Oh bad luck, I hope it isn’t too severe. I had it 18 months ago but virtually every cold I’ve had was worse. Felt rough for 72 hours but tested positive for 10 days. Wish you well and let’s hope for a Happy New Year for us all.
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Hi Geeps I know exactly what you mean. I was totally the same, being given a diagnosis when I felt well and healthy. The doctor just spoke in jargon all the time, so came away totally bewildered. Think these people need to remember they are there to help and support us, the people with bc and not behave with breathtaking arrogance I’ve seen first hand.
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Yes, getting that unexpected diagnosis is hard to get your head round isn’t it? Hitherto, when I’d had to go to hospital it was because I was ill and had to be made better! Here I was, feeling great - fit and well, facing treatments that were going to make me feel crap!!
In some ways I was reassured by the slick and confident, well rehearsed routine of diagnosis and patter - my surgeon was very kind and reassuring when he’d gone through his routine. The nurse seemed sympathetic. I couldn’t understand why I felt resentful though, of being told ‘this’ will happen ‘that’ will happen. I was conflicted between gratitude and resentment!! Perhaps it was shock and denial too, because it took me a long time to accept properly. Once I’d learnt a bit more, I decided that I was jolly well going to play some part in my own treatment plan - somehow! I needed to feel some control. I was lucky I think, to have a sympathetic oncologist. I have decided to request a meeting with the surgeon after my first annual mammogram - I want to get things from the horses mouth rather than look them up all the time! ‘Don’t look things up’ say the nurses…but talking to them over the phone is not much better - I can’t seem to make them understand what discomforts I’m getting and where - I just get platitudes and generalizations. I get frustrated waving my arms around pointing at bits of my body - on the phone!! A face to face meeting with someone - real human interaction - is sometimes necessary! Even just for peace of mind. That’s important too isn’t it?!
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The surgeon at my first meeting, told me that I WOULD be taking hormone therapy for 5 to 10 years. There was no questioning it - it wasn’t a suggestion or a recommendation!!! I had seen the effects of them on a friend and I have already experienced one disruptive menopause! I fretted about having to take the drugs for weeks. Then I met the oncologist to discuss radiotherapy. He started by asking me what and how I felt about treatments on offer and which did I want explained first? I told him of my dread of hormone therapy! After explaining my fairly low risks and us (my husband too) discussing all the pros and cons, he said it was my decision to take - he would support me. I could have hugged him! Subsequent meetings with nurses who questioned my choice undermined my resolve temporarily, but I was so happy to be able to come to a clear decision with guidance. There’s always a small risk, but the drugs didn’t get rid of all risk anyway.
If anyone has any questions about the American system please feel free to ask me. I am in the US and have been treated in states. There seems to be a lot of misunderstanding from those outside of our country on what exactly our flaws are. We definitely do have them but cancer care here is quite superb for the majority of us. Anyway I wish you all the best in making your decisions!
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When I was first diagnosed, a friend commented how much support there was for cancer patients in the NHS. If only! The system is very stretched. I also only had telephone appts with my oncologist & the system for self-initiated follow-up seems a bit hit & miss depending which BC nurse returns your call. I have had increasing pain following surgery & radiotherapy, which I first reported 5 months ago. However, through the intervention of my designated BC nurse, I have now seen the consultant who is bringing forward my annual mammogram & also arrranging a focused ultrasound. Not sure whether to feel relieved at being taken seriously or even more worried!
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Yes that sounds familiar! Although I did have a face to face with the oncologist. I think I’d have had a wobbly if had been offered only a phone call!! I really needed a consultation with my husband there to be a second brain on my side!!
To get to the consultant you have to run the gauntlet of the BC nurses…and I seem to have a bit of a personality clash with one of them who is a bit short with me. The trouble with this ‘constant access to BC nurses phoneline’ is that you have to psych yourself up to ring! Things have to be bad enough or you feel you’re wasting their time! I know they say ring anytime - no question is silly - but the truth is that we don’t do it unless we get worried enough! Sometimes we need someone to LOOK !? A routine appointment, or even a drop-in centre like they have at some hospitals would be reassuring. I felt that each time I rang I was hearing the same reassurances over the phone every time, whoever I spoke to, and they weren’t listening to my description of pains and discomfort that wakes me at night and which I can’t find in any of the ‘possible side-effects’ routine stuff. My routine mammogram is next week and the nurses said wait till you get results and then we’ll see if you want to take it further (ie you might shut up then!) However, the message came back that after hearing of my phone calls the consultant wants to see me after the mammogram results come back. Result…but like you, I’m now wondering whether I should be relieved or more worried!!!
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A review by Cochrane a few years ago looked at the costs and benefits of the mammogram programme. The Review found that on balance it was detrimental as it led to overtreatment of some breast cancers which were not going to kill the women, whilst not detecting the quick growing kinds of cancer that don’t wait three years to pop up. So there’s been some back peddling, same as with breast self examination which again wasn’t found to be effective in reducing breast cancer deaths.
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Mine was grade II invasive so not something you want hanging round growing quietly for long! Getting it so small was a good thing for me. It would have been a much bigger problem had it been left to grow surely. It’s the biopsy which finds that out though, not surgery.
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I guess nothing is foolproof . Both myself and one of my friends were diagnosed within 3 months of one another by routine mammogram and were both relieved to find that we hadn’t been negligent or incompetent at self - exam as the BCNs couldn’t feel anything either . Mine was tubular , very small bang in the centre of my breast and grade 1 . Hers was lobular relatively small, initially told Grade2 but the Oncologist confirmed Grade 1. We have both had lumpectomy and SNB 5 sessions of radiotherapy and recommended 5 years of endocrine therapy . Neither of us feel we have been over- treated , though I have abandoned endocrine therapy ( with the support of BC team ) which for me might have been overtreatment.
There was a major difference in our treatments ; I had a very progressive surgeon who said that as my cancer was such a low risk for spreading he was prepared not to do SNB if I didn’t want it. In the end they just took 1 ( the one that lit up the brightest ) my friend on the other hand had a different surgeon she didn’t much like who took 4 SNB and ended up with cording - but then lobular has a greater risk of spreading than tubular . We were both node negative .
I spoke to my surgeon at length about treatments as I’m on a clinical trial and his reply seemed to suggest that surgeons are still tied to standards and protocols that were developed to treat more advanced cancers . Therefore taking lymph nodes / multiple SNB even for very low risk cancers where there’s no suspicion of abnormality etc. is still common practice .
De- escalation of treatment is certainly something that they are trying to do . For one thing since Cochrane was published the radiotherapy protocol has changed for many of us with 5 sessions 29gy being given instead of 40 gy over 15 sessions . I’m on the SMALL trial which is researching the possibility of removing certain small breast cancers ( the criteria for this is very rigorous ) by vacuum assisted excision ( VAE) under radiological guidance so avoiding WLE / general anaesthetic / radio frequency seeds / guide wires / radio active dye / SNB altogether . It’s been running for 5 years in some areas and since 2021 in my area . I was a randomised for and underwent VAE which has been used to remove benign breast lumps for some time. For me it was unsuccessful but it has been successful for many women .
I’ve just read what Cochrane said about over diagnosis and I wonder if I might possibly have fallen into that category and I don’t like the thought that it would have been left in there . I had this discussion with my surgeon as I have a male friend with a slow growing prostate cancer who has been advised not to have any surgery /active treatment because that would be over treatment and could potentially cause life changing side effects for him . He is on active surveillance for the rest of his life (regular cystoscopies and blood tests lots of waiting for results so not pleasant or easy). My surgeon couldn’t explain why this was but was adamant that my tiny slow growing tumour which rarely spreads needed to be removed .
It makes me feel a bit angry that the value of the screening programme would be called into question . At BC support group in December with every new person I spoke to ( 8 women ) the question " so how was yours found ?" was asked. In every case the answer was routine mammogram - so it is picking up a lot of early cancers , however 2 ladies said that at surgery their tumours were found to be rather larger than shown on any of the pre- op mammograms and scans . Obviously this is anecdotal but some of the threads on here have a similar story that something has been picked up on a routine mammogram which on further investigation have proved to be bigger / more advanced than first thought but at least it picked up something.
However I agree with Cochrane that routine mammograms might not frequent enough - though I guess a line has to be drawn somewhere . I know when I get kicked back into the screening programme I’m probably going to pay to have an extra one midway through the 3 year interval .
Joanne
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I only had 1 node removed, but that area has been really troublesome since! So many nerves are in that area that numbness and prickling pains have been there since surgery a year ago. The node scar site is like a permanent painful bruise while the WLE site is painless! Ladies with more node removal have more risk of lymphedema which can be a big problem. Taking out 4 nodes sounds a bit excessive for a grade 1 cancer - but if that had been believed to be grade 2 I suppose a surgeon errs on the safe side.
I still feel that AIs might be overprescribed - obviously there’s a duty to err on the safe side for recurrence risks, but they can have serious, health threatening SEs and I don’t think there’s enough of a conversation with women about them, bearing in mind that us women are at a disadvantage by usually being scared sh……s! Then it’s difficult to work out the cold maths.
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They have definitely pulled back on surgery for some slow prostate cancer. They realised that new tests were picking up cancers that would never have been a health issue, but knowing they’re there makes people feel they need to act. The side effects of that surgery are life changing though. Constant testing and checking might be unsettling, but hugely preferable to surgery!!!
The concern for me is the follow up checks more than anything. I was grade 1 and had 4 nodes removed. I have had ‘mild’ cording but got full use of my arm and just a bit stiff at times.
In terms of mammograms though, mine didn’t show at all on the scan! I have zero faith in them…but I have v dense tissue. Have been advised tamoxifen will make them less dense so we shall see…
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That’s a really interesting and thought-provoking post @JoanneN. I’ve read so many articles and seen so many interviews with (mainly old male) BC surgeons who call into question the value of mammograms and equally self-examination. I just don’t get it - how else would our cancers be discovered? Mine was too small to be felt by all the professionals so thank goodness for the regular mammogram, say I. We’ve had drummed into us for years that the success of treatment depends on early detection so what is the alternative? Mammograms don’t detect all BC it’s true, particularly in those with dense breast tissue (tumours are breast tissue after all) or many lobular carcinomas but there are an awful lot that are picked up. No doubt there is continuous research into alternative methods but, for now, it’s the best we’ve got.
The over treatment point I’m sure is real but I haven’t got my head around it yet.
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