To have the op or try alternative

Jobey,

I must have missed the post that said any one person on this forum could dictate to another person on the forum how they chose to treat their own cancer in their own body?!? You as did many others here chose to deal with it in a certain way that does not have a 100% guarantee of success....

I am choosing to look at other options as is Chloecat which does not make you wrong for choosing what you want to do with your body nor does it make us wrong to choose our way forward...

Sorry that so many people feel that your way is the only way, it worked for you but not everyone wants to take that path....

Chloecat is looking at other options and generously sharing those options with other people who like to have control over what happens to their body rather than just rolling over and saying to the authorities.. "Here is my body,  you cut burn and poison the cancer out  of me and at the same time do severe damage to rest of my body......"

Well I'm not choosing that for my body, I'm helping my body through less invasive conventional treatment combined with nutrients known to fight cancer cells but support the rest of the body...

I'm not saying anyone here is wrong for making the choices they made for THEIR body so please don't tell me what I should or should not do with mine please....... 

Hello Winterwolfsoul

I haven't followed your treatment as I am new on the forum but I was interested to read that you are on Letrozole which you mentioned was least invasive. I am not sure what your cancer is but wanted to know whether you were first offered something more invasive but you got something less invasive?

Were they both offered to you? Could you please explain how you managed to have a less invasive form of chemo....

thanks

Suzie 

hi  

I don't think you're being bullied at all, I supported your views in another thread and I support your right to have a view here but not at the expense of the person who started this thread for a very valid reason, one which I feel grateful to her for so doing.

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/p/136187/1054996#1054996

having a breast cancer diagnosis is extremely challenging

I was given information which I struggled to take in and I found myself having to make decisions, mostly about reconstruction options.

So I went about it in the only way I know how, I conducted some research using Google. 

I don't know Chloecat, I've never met her, I just happened upon this thread and it struck a chord because I was shit scared of dying because everyone I knew who had had chemotherapy had died.  I don't know anyone else on this forum apart from Kacang, who I travelled to see in Canberra when I was in Australia in August and Misty Moley who lives near me.   And I met a few others in London on a meet up.

I'm here because I felt I could use my less than perfect experience to help others, It's that simple. 

I didn't want chemotherapy and I didn't understand why I needed it if the surgeon had removed all my cancer, but during that investigation I discovered that the surgeon hadn't surgically removed all of it. 

That left me in an unusual situation because I then questioned everything.

Why did the surgeon miss the obvious tumour ?  Because they were following the radiology report. 

Why did the radiology report miss the lesion ?

Because someone didn't pay attention ...

Why do I need chemotherapy, well it's belt and braces .  Why do I need belt and braces ?

and so on

I had to question everything. 

But once I'd started it made sense. 

I knew I'd been told whilst preparing to give birth to my fourth child, yes I know I was a little late uncovering this gem but, what happens if things don't go to plan?  

Ask. What happens if I do as you suggest and what happens if I don't?

The experts will tell you 

and the more experienced and expert they are the more honest they will be. 

There are alternatives.

I want you to have the best treatment and the best support but you need to understand there are other points of view. 

I was told I was being given the gold standard treatment, turns out that wasn't the case.  Was I lied to ? No. I was just 1 month too late for the double dose of trastuzumab and pertuzumab. 

Will it make a difference ??????????????????????????????????????????

we'll never know

I had the best conventional treatment available at the hour minute and second I was prescribed treatment 

will it be enough

watch this space

Hi Suzie, 

When I was given my diagnosis I was kind of told that they would make an appointment for me to have the cancer surgically removed in accordance with their recommendations based on my diagnosis which was basically stage 1, slow growing breast cancer followed by radiation although chemotherapy was not mentioned to me at that time. 

I told the surgeon I didn't want surgery, radiation or chemotherapy but from research I had done myself prior to the diagnosis I asked if my  cancer was ER which they confirmed it was and asked me if I would consider hormone treatment which I said I would consider if they could tell me more about the drug they would use... I was given a leaflet about it and asked to call my breast care nurse within 2 days stating if I wanted to start it in which case they would write to my GP to prescribe it for me... 

In order to make the best informed decision I asked work if I could have 2 days emergency leave so I could research the pros and cons of letrozole which was the drug they were offering and I decided I would try it alongside diet and lifestyle changes to give myself a better chance of successfully beating the cancer.... 

I have to go back for a check up on 1st Nov followed by another US around 1st Feb at which point depending on the results I might review my options.. 

Hope that helps... 

Suzie W said:

Hello Winterwolfsoul

I haven't followed your treatment as I am new on the forum but I was interested to read that you are on Letrozole which you mentioned was least invasive. I am not sure what your cancer is but wanted to know whether you were first offered something more invasive but you got something less invasive?

Were they both offered to you? Could you please explain how you managed to have a less invasive form of chemo....

thanks

Suzie 

Hello Helen, Lavender girl and everyone on this thread

I am not on this forum very often now, but I was for twenty months whilst going through treatment.  This thread has come through to my inbox and I thought I would give my thoughts and experience as people on this forum supported and comforted me during those long months.  

I learned so much from so many extraordinary women and men going through a breast cancer diagnosis.  I am over two years in remission and cancer free in the present time.  I was on letrozole for 15 months prior to     Surgery where I also had reconstruction.  My tumour was rather big, 48mm, hence the long time on letrozole in order to avoid a mastectomy.  I ended up with a partial mastectomy and LD flap reconstruction at the same time so was a four hour surgery.  This was followed by three weeks radiation six weeks later.

Unfortunately I had a bad time with the radiation, but I got through it and I was lucky I did not need chemotherapy.  My tumour was Oestrogen receptor cancer (8x8).  They took three lymph nodes and there was no cancer there, so I consider myself to be very fortunate.

I had a bad time with the letrozole during the 15 months, but it is all a very individual experience as some ladies only experience minimal effects.  I was familiar with Chloecat's thread, and at one stage considered alternative options myself as her threads are informed and honest about her experiences in the alternative routes. 

However I made the decision to go with the medical science route and I did this because I was able to discuss  my thoughts and feelings with others on this forum and make what I considered to be an informed choice.  I also chose not to take letrozole for five years after treatment because of the side effects.  This was discussed and agreed with my oncologist. 

As we all go forward with the courage strength and resilience that it takes with a diagnosis like this, we can support each other with all our different views and feelings because in the end we have each other to draw on and share our fears, our laughter and our tears and we can become stronger because of it.

My thoughts are with you all as you take this road and when I was first diagnosed back in April of 2017, someone said to me...cancer diagnosis is like being in a foreign land where you have to learn a foreign language rather quickly.  How right she was, but in my experience it also  gives you a strength you never knew you had and you are different at the other end , but in a way that is profoundly positive...funnily enough...

With my love and a hug to each of you

Heather

Hi 

If this thread is a personal thread owned by chloecat  why is it not labelled as such? or put under a blog? In that way no other poor unfortunate soul will stumble in to the responses I have received (not Caroline) I disagree with your comments about blindly going into traditional NICE pathways.  

A few points.  Throughout the western world where mass breast screening is undertaken, there is debate with regard to over treatment of breast cancer.  One European country has dropped mass screening due to this research, which is suggesting the treatment of low grade lesions is not improving the survival rates. 

Thinking that chloecat is undertaking a one woman clinical trial which is going to benefit us all is just so really ill informed, she has her own contra health conditions.

Of course I wish her and anyone else all the very best on their chosen approach, what I want to say, is be accurate in your posts, as other women, not so fortunate to have a less aggressive cancer may believe what your are posting.

Lastly,  the NHS makes mistakes, private services makes mistakes, we've just locked up one breast surgeon who mainly operated out the the private sector, who really did mutilate women unnecessarily.

All the best

I support chloecat's right to post about her experiences without prejudice; I think it's a brave thing to share her journey here and she shouldn't be ridiculed.  Neither should those of us who choose the conventional route be called cowards.

To expect any treatment for any condition to have 100% success rate over 5 years is frankly ridiculous.  News flash - you could die from all sorts of things over the next 5 years, nothing to do with cancer.  Particularly if you are older and like any other cancer, prevalence rates rise with age.  Many cancer patients will have other medical conditions as well as cancer.

The reason the NHS provides evidence-based medical treatment is precisely because there is evidence behind it.  The problem with alternative treatments is that the evidence for their effectiveness is usually either weak or absent.  For those of us funding the NHS it is therefore unacceptable to include them in the standard treatment pathway.

I will also repeat myself on the subject of "research".  Google searches and reading a few papers does not constitute clinical research or replace many years of study and training.

I'll edit some of the contributions in this discussion to remove some of the more personally directed comments. This is an open discussion and everyone is welcome to contribute. 

Here is a relevant section from our Community Guidelines:

We ask you to be tolerant and respectful of other members’ beliefs and opinions at all times. We understand that people often have strong feelings about the topics addressed in this community however, personal attacks are never justified.

We may remove any comments others find offensive or threatening or which are deemed to be escalating a situation. We may also remove an entire thread if a strong disagreement develops. It is your right to disagree with an opinion, but do not attack the person or people who hold it and please make your point respectfully.

If someone posts something you feel violates our Community guidelines please let us know immediately by using the alert moderator link (beneath every post), and then ignore it. Please do not confront members publicly, just report and ignore.

Thanks,
Michael.

Hello everyone, this is my first posting on here and this particular thread has grabbed my attention. Firstly I do think it right that Chloecat should be able to question conventional as opposed to alternative treatments in respect to her own personal diagnosis and beliefs, that is her right but I am not sure that this forum is the correct place to do so as i assume that Macmillan support only evidence based treatments?

My worry is that many people in the general populus are unable to understand real scientific research enquiry and distinguish it from pseudo-scientific research. I am a nurse myself and hold a Bsc Hons in Psychology which does require an in depth analysis into research methodology and statistical analysis of data. It takes years of study and training to be able to analyse research findings accurately. One can always find a research project to support an individual's ideas but that does not necessarily prove that , that theory is correct.

One of the greatest scientific research Philosophers of our time 'Karl Popper'  argued that "scientific theories are distinguished from non-scientific theories by a second sort of boldness: they make testable claims that future observations might reveal to be false. This boldness thus amounts to a willingness to take a risk of being wrong. On Popper’s view, scientists investigating a theory make repeated, honest attempts to falsify the theory, whereas adherents of pseudoscientific or metaphysical theories routinely take measures to make the observed reality fit the predictions of the theory."

As a nurse I will only accept evidence based treatment that has been shown to work through vigorous scientific enquiry, I would certainly not risk my life to some pseudo-scientific theory. I was diagnosed with Her2 positive, Oestrogen and Progesterone highly positive grade 3a - size 8cm in total in situ ductal BC with 3 different stages of cancer cells including widespread DCIS in May last year. I had 6 cycles of Docetaxel, Pertuzumab and Herceptin followed by a further 9 months of Herceptin and now 10 years of Tamoxifen/Letrozole. After 2 cycles of chemo my tumour had shrunk by a half and after histology done post complete mastectomy and removal of 6 lymph nodes I was shown to have had a complete pathological response to the chemo - no living cancer cells detected. All soft tissue and bone scans clear :)

Yes the side effects were hell and yes I continue to have hot flushes and some other changes due to the Tamoxifen but  I am still alive, my body has almost recovered from it's poisoning and I am now looking forward to living a full and active life after just one year out of that. My Oncologist expects me to live a long life and die of something else not cancer related.

I think the brave warriors are those that stick to the conventional treatments and put up with the side effects for a better, scientifically researched outcome than those that don't.

Recently I sat next to a farmer at a friend's dinner party who spent the entire evening telling me that he would never get cancer as he drank some special Green Tea concoction each day containing Apricot kernels (which incidentally contain high levels of arsenic) He then said that if he did get cancer, which he had already said he would not, then this concoction would cure him! I found this not only intensely irritating but also extremely sad.

Totally with you ArgyMargy and hoping we all get where we want to be xx

I don't recall reading a single post that implied that anyone here is either a coward or braver depending on how they as individuals choose to deal with the rogue cells in their own body. I certainly have nothing but admiration for those ladies who have undertaken conventional invasive treatment for breast cancer.. I'm just saying it's not for me as I prefer a more holistic approach to helping my body fight the rogue cells rather than another approach which involves harming my body in an attempt to heal it...

At this point in time the original Hypocrates Oath springs to mind...

"First Do  no harm"..... Sadly conventional treatment does do harm....

Long may we all live in harmony with each other and our bodies and have the freedom to heal them in whatever way best suits us as individuals...

I respect everyone here who chose conventional treatment so please extend the same respect to me and others on this forum, remember years ago everyone thought the world was flat!!