Why do we seem to get such diffierent advice
Why do we seem to get such diffierent advice Dear all,
Why do we all seem to get such different advice? Looking at this website I am surprised at just how varied it is.
I realise that as individuals we are all different but even so it seems that people with similarities in breast cancer type, size, stage and hormone receptor / herceptin status are treated very differently.
Should we all be asking our doctors to explain exactly how they have come to their treatment decisions and even ask for the relevent research papers?
With best wishes,
Sue
Seems to me it depends very much on whether a person wants to be in conrol and deeply involved in diagnosis and treatment, or prefers that the medical profession take charge. Some people really don’t want all that information, and looking at other forums there are times when I feel there is too much information, much of it highly scientific and not really of much significance to the individual. I have met women (and men) in chemo suites who quite franklly do not want any information.
Yes, there are similarities in condition, but the variants are the individual body metabolism and response to drugs. My response to some drugs is extreme as I rarely have taken medication so the body is not used to them. The doctors have now learned this and take care to adjust accordingly.
There is also always the problem of public finance and its use or misuse. Some authorities are clearly quite dreadful, others much more flexible, and the whole business is not helped by fragmenting the country so that two regions freely prescribe expensive options while a third is blocked by regulation.
As to asking the doctors about the way in which they reach their decisions, of course we could. The responses would be interesting, not least because some consultants have appalling bedside manners and find it difficult to talk sensibly to non-medics.
I’m not sure that it is quite true that we all get such different advice. People who take part in these forums often have problems whereas there are very many others who never participate and go through treatment with little trouble. So in a way forums are biased in favour of problematic conditions and reactions.
Would be interesting to hear from people who have sought deeper information.
best practice is embodied in NICE guidelines Improving Outcomes in Breast cancer update published 2002
not that all doctors follow them…
Mole
But NICE can’t always keep up Take the recent decision in favour of aromatase inhibitors. There has been mounting evidence during the last few years that these have benefits over tamoxifen for some groups of breast cancer patients, and some oncologists started using them much earlier, particularly for higher risk patients.
There are always grey areas in treatment and differing opinions. Some oncologist may feel that the unknown risks of new treatments offset the benefits, while other oncologists may be more conservative until the long-term data are in.
Conflicting advice You’re right SuperSue, there doesn’t seem to be clear consensus regarding treatment . My GP says ‘it’s not an exact science’ and I suppose that’s true.
I think I remember reading that your onc had recommended you stop taking tamoxifen after two years though you’re HER2-? My own situation has been a bit unclear. Dx with a Grade 2 ER+ at biopsy , then a Grade 1 at excision I was advised to have tam and zoladex together ( such a sweet cocktail) though the St Gallen Guidelines in 2005 did not concur. I went for a second opinion at the Marsden where I saw a nice lady who admitted that a) they don’t really know yet whether the combination is better than single treatment ; it’s still subject to trial and b) it probably wasn’t necessary for me. The word ‘probably’ was the one that left me none the wiser. I’ve kept on the regime.
I do like to know about the disease. I am the ‘vigilant focuser’ type Musa Mayer talks about in her book After Breast Cancer. But I’m not sure where it’s got me. Maybe a bit more accepting of the uncertainties of a disease that’s just not fully understood yet.
Best wishes
Kitty
Best advice I have truly come through a long learning curve on this site - can’t believe I was so naive, if not totally ignorant, when I got breast cancer. After some 30 yrs dealing with an orphan disease like Crohn’s, I should have known better. I guess I was in shock when dx with bc, and I was trying desperately to find out how I would deal with Crohn’s concurrent with bc and didn’t even think of looking on the internet for advice for bc at that time. How stupid I was.
Some 3 yrs after dx I cannot imagine why I then didn’t question the Oncologist’s advice that I should have chemo. He said I should have it, gave me a written statement as to the benefits of chemo, rx and hormone treatment. I just didn’t understand why, before surgery, the surgeon told me I could have a WLE with sample axillary nodes and radiotherapy, or Mastectomy. Seemed clear cut to me then. Although I didn’t know I had axillary nodes, they showed me a chart and explained what they would do. I figured I could always go back for a mastectomy. Nobody mentioned chemo, so it was a huge shock after WLE and sample axillary nodes, to find out my cancer had spread. to the lymph nodes. So, of course, I went with chemo and rx - I wanted to live,and felt I had no choice. I had 6 x Fec chemos. It was unbelievable - spent some 4 months on Frutijuice, and no food. Had diarrhoea in the street a few times, which was very humiliating. Couldn’t even do 6 steps to my bathroom without messing on the carpet. Thank God for Dettol.
With hindsight, I would have taken more time to make that decision about chemo as I was also on chemo for Crohn’s - methotrexate, which used to be an old chemo drug for bc. The decision to have chemo is now coming back to haunt me. My gastro this week has written to me (couldn’t get an urgent appt for 2 months, so is the sad state of our NHS) saying he is concerned about my treatment for Crohn’s in the light of my breast cancer chemo! First time in 3 yrs he has mentioned my cancer and my current chemo for Crohn’s .
Gosh, you are darned if you, and if you don’t! How on earth do you make these decisions? I truly don’t know what to do - daily diarrohea, messing my underwear and trousers - just want to curl up under a duvet and sleep.
I don’t think any of our Oncologists know the ultimate treatments for any of us - no matter our individual diagnoses. I do feel they do the best they can for us in light of current medications. We just have to trust them - we are not doctors. All we have is a handle on our bodies and how we feel.
Now got a bit hurdle with my Gastro -how to control my Crohn’s - jeez, bc seems so such an insignificant problem ( no mets) compared to life threatening Crohn’s as I have strictures in my small intestine. Guess one of these diseases will get me in the end, but I live in daily hope and still smell the roses.
Liz.
for sue i think the city you live in could determine your treatment.
also sue, i had a slight delay in being referred, look at my profile see if u think i should fill one of the forms in (if it helps someone)
mags x
Hi Mags Hi Mags,
Sorry about not replying sooner; I’ve been very busy with work.
I’ve had a look at your profile.
It’s nice to know that your cancer has been caught at a very early stage.
Clearly, your main delay was due to the GP forgetting to refer you. I think that you could do several things about this.
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I think that it is a good idea to fill in a National Patients’ Safety Agency patient report just to say that this has happened.
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You could go and have a chat with your GP/health centre
representative and say to him/her that it is important that it doesn’t happen to anyone else. Ask him/her what procedures he/she/the health centre has put in place to stop it happening again. -
You could also ask him/her to report the incident anonymously to the National Patient’s Safety Agency as either an ‘adverse event’ or a ‘near miss’. (This means that the NPSA will get the information twice and will be more likely to take note of it. ) Near misses are when mistakes are made that could have caused serious harm but didn’t - more due to luck than anything else. I think in your case your prognosis is still very good but imagine if you’d had grade 3 breast cancer; it could have been much worse. Don’t be afraid of saying this to your GP.
It’s clear that there was a small delay in diagnosis because the triple assessment came back negative even though you had grade 1 breast cancer. This does happen to about 4 in 1000 cases. Good job you decided to have the lump removed and three cheers for the alert pathologist.
Best wishes,
Sue