Gabbie’s Question
Gabbie’s Question On the apricot thread this lady put a very interesting question. I thought it might be worth putting it here and seeing what answers we come up with.
For the question, see below…
Hi not sure if you have come across my posts at all but would be interested to know exactly what you have dealt with by way of breast cancer - diagnosis and treatment from medical sources - how you you arrived at your decisions and what you think to the ‘adequate not excessive’ approach I am trying to adopt regarding my own treatment.
Wed 14th I am booked for first of 15 radiotherapy sessions - still researching case histories like mad - but accept arimidex may be my best ally apart from hanging on to my own immune system in tact.
Would appreciate any ideas advice or suggestions for further investigation.
This ‘disease’ is exactly that DISS EASE - makes us all walk around with the word FEAR in front of us obliterating all normal life at times.
Hi Gabbie Hi Gabbie,
I thought that your question was a good one because it probably cuts to the heart of the matter - dealing with fear.
I was diagnosed in 2003 with two grade 3 oestrogen-positive tumours. I underwent a mastectomy, chemotherapy, radiotherapy and hormone therapy. I am currently taking no treatment whatsoever - conventional, complementary, alternative or otherwise.
I think if you read the threads you’ll find that myself and another lady, JaneRA, are very clearly anti complementary therapies. And yet both of us have had delays in diagnosis and you might think that we had every reason to mistrust the medical profession. The truth is we both (and I hope JaneRA doesn’t mind me saying this) have a respect for scientific rigour and would prefer such rigour to the hearsay and emotional blackmail that can accompany complementary and alternative medicines.
If you want to know my feelings on complementary medicines then please feel free to look at page 2 of this forum and read through the thread ‘Complementary Therapies recommended by Supersue’.
The particularly interesting thing that you touched on in your question is the issue of FEAR. I think that issues of fear, control and uncertainty are key to any real discussions about complementary therapies.
Many of the women on these forums are very frightened of the future. It all seems so very uncertain. Who knows what will happen tomorrow. Occasionally people say to me that no one knows what will happen tomorrow and that anyone could be run over by a bus. I usually gently remind them that as I’m careful on the roads I’m not too worried about the bus but that I don’t have any control over whether the cancer will return or not.
I think that here is a definite pattern to the fear. When people are first diagnosed there is a profound sense of shock and unreality and this, to some extent, cushions the fear. During treatment people are afraid but have lots of support - medics, friends, family. After the main bulk of treatment (surgery, chemotherapy and radiotherapy) finishes people often experience great fear and depression because suddenly the uncertainty of the future becomes clear and the support is no longer there. These feelings often take people by surprise because they expect the end of treatment to be a time of celebration. Eventually people learn to compartmentalise their fears and not think about breast cancer every day and it gradually stops being so ‘life obliterating’, as you so aptly put it.
I think that people embrace complementary therapies for two main reasons: to have some feeling of control over the breast cancer by doing something that they feel might keep the cancer at bay; to avoid leaving any stone unturned thus potentially missing out on something that might make a difference. They think that taking complementary therapies won’t do any harm to themselves or others. They often carry on taking complementary therapies indefinitely not because they have evidence of benefits but because they are afraid of what will happen if they stop. I could discuss all these points in further detail and have done so in past threads. Here I shall merely say that none of these reasons have any sound medical or scientific basis.
I’ve now completed my conventional medicine treatment. My oncologist advised that I should give up my hormone treatment after two years of taking both zoladex and tamoxifen. I could have insisted on taking tamoxifen for another three years but the majority of the benefit of tamoxifen is early on in its use and long term use of tamoxifen has its own risks.
I have decided not to take complementary medicines because there is no strong scientific evidence for their efficacy. The moment there is strong scientific evidence I shall be at the front of the queue. Instead I’m putting my energies into living. I have to learn to cope with the uncertainty or I am doomed to a life of fear. And I’m not prepared to accept such a half life. I want to live boldly and enthusiastically and humorously and and joyously because life is right now, it’s today.
So, I don’t know if all this helps but I can tell you that the fear does diminish with time. I take my fear out of its box occasionally and have a look at it but most of the time it doesn’t affect my life at all. I cannot promise that I will alway be well or that I won’t have any regrets but I’m not going to spend my entire life thinking about breast cancer. I prefer to think about friendship, food, sex (now that the tamoxifen is finished), natural history, politics, Dr Who, shopping, badminton, volcanos, Beethoven, love, champagne and chocolate.
I wish you the very best of luck. The site is good and very supportive and although we have the occasional heated argument and virtual punch-up here in ‘Complementary Therapies’ we all have each other’s best interests at heart.
Best wishes,
Sue
Two years or five on tamoxifen? Hi Sue
I wanted to add a bit about the optimal time for tamoxifen. I think that current research shows that 5 years is indeed better in terms of event free survival ( nice euphemism?) than two if the tumour was ER+ AND PR+ . Those that lack the progesterone receptors seem to fare better with AIs. I have not read that most of the benefit from tamoxifen is seen in the first two years. I thought that for pre menopausal women, little benefit was seen before the second year. But that may be without Zoladex !
I’m going to stop Zoladex soon and would like to be done with tamoxifen too. ( Sex? You lucky girl! ) . However, I doubt it would be with the support of my oncologist . 
Best wishes
kitty
Hi Kittyhawk Hi Kitty,
Strange how different oncologists give different advice. Mine said that there was no difference in survival between taking zoladex for two years and tamoxifen for five years and taking both for two years.
This was the result of fairly new research so it might be worth asking your oncologist about it.
Best wishes,
Sue
Hi People Hi People,
Any responses to Gabbie’s question?
Best wishes,
Sue
I personally would not and did not turn my back on conventional medicine…yes i did have reflexology and reiki during chemo…but to try and relax me not to try and replace conventional medicine
i am at the moment having acupuncture for menopausal symptoms…still sceptical as to wether or not it is working even after 7 mths of it.
I know a lady who was dx over 10 yrs ago, has never had surgery, had a very weak form of chemo and few doses of radio’…was put on tamoxifen…took herself off…went back on…was changed to Arimidex…and only started taking it a few days before her last check up a few weeks ago…at that check up they found malignancy in the lymph nodes…that is when she finally let them do the biopsy…which she wouldn’t have until a week later…she finds out what happens next on friday.
This lady is a spiritualist, she is a reiki master etc.,…goes to healer once a week, eats apricot kernels in pineapple, blueberries, raw brocoli, the minimum of dairy products, drinks green tea, is surrounded by crystals in her home, does visualisation every night, where she visualises herself at her 70th birthday party…the list is endless…
yes, you could say well it’s worked for her to a certain extent…but has it …or by refusing check ups, surgery, biopsies is she still in some kind of denial…or is it still about being the one in control???
All i know is i wouldn’t want to be knowingly walking around with my tumour still there…and when i was dx and mentioned to my nurse that i knew someone who had never had surgery, after a brief description of this lady, my bcn said ‘’ karen please do not talk to her or take advise from her, she has chosen to deal with bc in a way that we don’t neccessarily agree with…but its her choice ‘’
Thing is it is about choice…but i would srtongly advice anyone to make that choice an informed choice…discuss YOUR case history with your onc., etc.,…and remember everyones case history is different so don’t make a decision based on someone elses.
Gabbie…only you can decide what road to take…but try not to have an information over-load in making that decision.
Fear…i don’t think it ever leaves us completely…you just have to try and learn to live with it…or pop the diazepam like i have to!!!
oh and by the way …this lady’s faith healer actually told her to have the biopsy…
karen
Sue I have found that self help is my very good friend. I no longer feel like the cabin boy whilst several different captains steer my boat [occasionally in conflicting directions]. The benefits are disproportionately high to SH efforts.
So I am prepared to TRY anything which looks helpful.
As there are no cast iron evaluations of what suits for whose ailment the only thing to do is to see if we feel better with whatever we’re trying and act accordingly.
You’re right about knowledge- between overstretched NHS budgets and huge queues at br ca clinics it pays to accumulate as much info as possible-the reward is often extra life mileage!
The golden rule is to be aware of body, what it likes, what it doesn’t, and any changes in how it feels. Best wishes, dilly
For evidence and realism I guess many would see me as Supersue has described me as being anti complementary treatments. Thats not exactly my position though as Sue says I say yes every time to evidence based medicine.
I know that many people find a range of complementary treatments helpful in managing/coping with the side effects of cancer and cancer treatments.Personally I’ve never said no to a spot of massage, have tried aromatherapy, and regularly see a counsellor/therapist. I think that alternative/complemtary therapies range from the pragmatically useful through the faintly ludicrous, the pleasantly experiential to the downright harmful.
What I object to with a passion is the claims made by SOME unscrupulous alternativists that this or that can help cure cancer, or prevent cancer. I hate the suggestions that cancer is in some way caused by having the wrong attitude, or that getting cancer is a message from our bodies to heal ourselves.
I was a fan of John Diamond long before I got cancer myself and I would recommend his polemical unfinished book Snake Poison to other sceptics.
I’m also a fan of Eduard Ernst who is the UK’s only Professor of Complementary Medicine who argues for an evidence based approach to alaternative/complemtary treatments.
I don’t think conventional medicine has all or even some of the answers to cancer…and I know that in more cases than we all care to think that surgery, chemo and radiotherapy( slash, poison, burn) won’t cure…but they are the best there is in the present state of medical knowledge.
I am now nearly 3.5 years since diagnosis of locally advanced breast cancer and have been well since the end of treatement. I count myself very very lucky this far. I have no magic potions or secrets and don’t put my survival this far down to my attitude, my bravery, my fighting spirit or anything other than a dose of luck and probably the 4 doses of taxotere I was lucky enough to get before it was widely available for primary breast cancer. Yes I have been very scared and yes like we all do live with fear…but one of the wonders of the human condition is that somehow yes we do all learn to live with it in the best ways we can. Fear is a part of life.
This is maybe a thread for hot topics/current issues cause I understand that other users may come to this forum for advice and suggestions from those committed to complementary medicine.
Jane
Hi Jane Hi Jane,
Sorry to misrepresent you.
Thanks for your reply.
Sue
Hi Sue Its fine! Didn’t think you misrpresented me at all…just wanted to put my own bit in.
I’m with you 100% on most of the fab. stuff you write about alternative treatments.
best wishes
Jane