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Time between initial diagnosis and mbc

Hi ladies

I’ve read that if the time between initial cancer many years this means cancer is less aggressive?.. any of you heard this

Barb xx

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If it's true, I'm sunk. MBC right out of the box in 2014. I consider numbers and stats, but choose not to focus on them. It would probably destroy me and therefore, what good would it do? Somedays I still can't believe this is my lot, but as long as I can I'll get up and try to live a "normal" life. Maybe I can outrun this by many years?

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Hello

You’re absolutely right..shouldn’t read statistics and stuff..I know I shouldn’t but sometimes they pop up somewhere and I start either panicking or dwelling on them..just seen my oncologist today and had to wait ages in a waiting room full of depressed looking patients..I was thinking ‘ what the hell am I doing here?’ And it just hit me that I was in the same situation and I’ve been crying all evening..my husband just ignored me

Sorry just having a bad day

Barb xx

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I’m so sorry Barb. I’d like to give your hubby a little knock upside the head. Yes going to the oncologist is a sobering reminder at the very least. My way of dealing with it may not work for you. I have a cousin who researched and went online to all the blogs. She “beat” it. So she joins the pink brigade every October. I know there are probably facts and figures that would send me into a tail spin. I fought for my emotional life when I was diagnosed, and it is an emotional challenge every day. So I don’t go looking for the stats. I take a sneak peek at them and keep going. I know one day I will not be able to turn away. I sometimes take a Xanax before my doc visits. Sometimes I plan a massage or a manicure around the visit. It is true these facts and figures find us, uninvited. That’s when I go to meditation or Buddhist writings to calm me. I work full time so I don’t have time to sit and mope around during the week. I don’t do well with lots of unstructured time, one of the reasons I decided not to pursue disability. I hope you have something that calms and centers you, and that it will help you get thru this day. I am sorry your husband seems oblivious. That must be so hurtful. I have a son who isn’t there emotionally for me. My only child. It kills me but I had to distance myself from him so he was not one more stressor in my life. I’m hoping you have a good friend you can confide in and lean on. nOT the one who thinks karma is at work here. There is a great magazine, “Breathe,” that is published in England. I love reading it, it is so calming and beautiful. Maybe look for a copy, fix yourself a nice cup of tea and sit by a window in a nice comfy chair and zone out. I also go to therapy. It has been a lifeline. I’m taking a vacation from it right now, but I don’t think I’d be as intact without it. My mental holiday is planning trips. My next is to Scotland. I can’t wait to be in the Hebrides and take in the beauty and ancient history. Just thinking about it makes me feel renewed. This is a scarey journey. and some days we get battered and feel defeated. Then we rise up again. We are pretty amazing, aren’t we? 💕

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Hi there

Thank you for your kind reply..you have cheered me up

I used to practice yoga twice a week and have been on several retreats and stopped after my diagnosis

Since your reply I’ve just contacted my yoga teacher to arrange a 1 to 1 session to see if he can recommend a routine I can do on a regular basis before I rejoin classes if he thinks is appropriate

I had a vertebraplasty a few weeks ago and I’m in pain still but my oncologist said she thinks this is post operative pain and should subside..I’m on strong painkillers which I despise taking.. I’m going to go up to the stables in a few hours and see my horse..darent ride yet but might put him on the lunge and brush him etc..I’m seeing the spine surgeon on Saturday for a follow up so see what he has to say

You’re so right about having too much alone time not being good.. I miss work so much but can’t continue because of back pain..I’m a retired dentist so used to being with patients and my staff etc and now I have nothing to fill my time..I do socialise with my friends but they’re busy working during the day

I shouldn’t really moan as I have no money worries and I’m getting good treatment..on Ibrance letrazole and xgeva which are supposed to be good so I ought to be grateful these treatments are available

At the moment though I feel as if I have nothing to look forward to except pain and death..I don’t really want to go down the antidepressant route unless I have to

All the best to you and thank you for being so sweet

Barb xx

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I love going on retreats. We have a few places near me, notably Omega, which have so many inspirational health, body and mind experts. It isn’t cheap, but it is so restorative. Also great vegetarian meals. I feel so renewed. Been to two. Thinking of going in Spring to hear Tara Brach, an amazing meditation teacher. She has a great website you can check out. Hoping your discomfort quiets down so you can get out and do something great for yourself. No matter what our family or social situation is, we are the only ones who can really change our lives. 🙏

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My oncologist has be on Ibrance (no cost as I am low income and Pfizer is covering it) and the Letrozole. My CA number suddenly hit about a thousand in September and these two meds have gotten the cancer antigens down in the 200 range in just a month and a half. However stage 4 is not cureable (is any of it?) In 2014 I was not MBC, was a stage 2/3, now I am not. I was also told that Ibrance will stop working eventually (by the onc.), but then there are other drugs beyond this that will keep it in check. He wants scans every 3 months, I get blood draws every week and the tumor markers every month. Watching the numbers decrease makes me hopeful, but I get reminded that this is stage 4 and not cureable when I go in to see the oncologist. So I do know how you feel. My husband went with me, first time since 2014 so he could ask the doctor about the Ibrance commercial on tv that says the drug has extended lives by 24 months. Well he got his assurance that beyond Ibrance there are others to pick up where this leaves off. So he can stop treating me like crap because I won't take it either.

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Hi there

I’m glad we don’t have commercials for Ibrance here in UK..being reminded all the time

My oncologist said 18 months was average for Ibrance but I’ve read that some ladies have been taking it for over 3 years..statistics again!!

I don’t take my husband with me for appointments..annoys me..I can tell he doesn’t want to be there

All the best

Barb xx

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I was in the Hebrides last year and you are in for an amazing trip. Well done!

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I cannot wait. I have a feeling Scotland will be a place I will want to revisit I am also going to Orkney. I think these places will live in my dreams. With this trip I will have visited every country in the U.K. and the Republic of Ireland. Giants Causeway in Northern Ireland was stunning. The beauty of it all makes me feel at peace with whatever is and what is to come. Sounds corny. But I find great peace in nature and I lose my fear of this wretched disease. Even if it is only fleeting

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Read The Lewis Trilogy books by Peter May before you go. They are set in Lewis and are excellent.

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Hi Barb,

I hear you about entering the waiting room and looking around at the other patients. I remember seeing a lady in tears last time I was at the Macmillan centre waiting to see my oncologist. Reading statistics is so depressing. I think it is best to try and avoid them if you can, because it does not paint an accurate picture of who we are as individuals.

I received a letter recently from my oncologist reminding me to have a flu and pneumonia jab. (I had already had a flu jab earlier in the month, so I made an appointment for a pneumonia jab next week). But it got me thinking about how fortunate I am to be so well taken care of. I told my husband that some people who end cancer treatment feel abandoned and just expected to pick themselves up and get on with their lives. But we have ongoing care and treatment. Regular CT scans, GP appointments, blood tests and visits with the oncologist keeps us updated on how we are doing and then any changes that need to be made can be quickly implemented. So I have been trying to look at the positives from all this, and I hope you will soon be feeling better.

Sophie x

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Thanks for this! I was diagnosed stage 2 then 20 months later stage 4. Statistics will always be “one extreme to another” per my oncologist. Plus, my stage 4 dx was really luck (lack of a better word). I had no pain but had bleeding. My endometrial biopsy was negative. Finally, a few months later it was found on Pap.

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Before I write anything else, I want to tell you all something about those "statistics." Alot of doctors don't even really understand what they mean and how they are to be used! Survival stats should never ever ever be applied to individuals! They are not meant to be and they are only "accurate" for populations of at least 10,000! What that means is that if the median survival time for those with mbc was 4 years, that does not mean that you or I or anybody here should expect to live for 4 years, no more, no less. What it does mean is that if some stat person was gathering data for a group of no less than 10,000 people who have had mbc, the then the median survival time would be about 4 years, but that would include people who were on their death beds when diagnosed, those with rip roaring aggressive mbc that never responded to treatment at all, those without the resources to be evaluated, and treated on an ongoing basis by a competent oncologist. Just the fact that we have found this online resource gives us an edge! And any doc or other medical person that gives you an estimate of how long you have, unless you are truly in your last few weeks of life, maybe even last few days, is only making an educated guess and is showing their own ignorance where statistics are concerned! Now, back to your question, Barb. Yes, I have heard that, too. But it is also a mistake to go in the opposite direction and think either, 'oh, I had progression so soon' or "mets were found immediately" and think that means aggressive cancer that is going to be terminal soon. It just does not work that way. Those of us who live with mbc for a long time only learn that one step at a time. One treatment works for awhile, maybe a long while. The cancer is stable or shrinks or even slows in how fast it is growing. The organ(s) it's in still functions. I've been living with bone mets since originally diagnosed with bc in March, 2004. That month was truly my "month from hell" with the news just getting worse and worse! I cried. I raged. I yelled and wrote dark angry poems. I started treatment. I met other women with MBC at a weekend bc retreat. I had scans that showed shrinking lesions. Slowly, I could wake up in the morning without immediately thinking of cancer. It's a process. For me, learning all I could, reading, talking with my onc, attending a couple of bc and mbc conferences, doing what I could to feel in more control of my life....... 'new normal' came about but has continued to change and, I like to think, grow. If we spend the remaining hours and days and weeks and months and years of our lives in a state of panic and dread, that's not how we want to live! Journaling, therapy, grooming the horse or walking the dog, meds for anxiety, depression or sleep, whatever we need to do to be able to spend more time living our lives and less time worrying about what's next, all that is good. It may take awhile to get there and we may not stay there 24/7 but it is better than the alternative. Finding others in the same boat sure helps me--knowing I'm not the only one with fatigue and odd bouts of forgetfulness, all we can do for one another--it makes a difference!

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Hi PJBinMI,

What an inspiring message! Thank you for that. I have been feeling a bit low lately, but then reading what you had to say really helped lift my spirits. You are right that statistics are not always helpful. In fact, I find them misleading and depressing!

It also made me think of how I learned my mum was dying from Non-Hodgkin's Lymphoma. It was only on the final day of her life that my dad and I were told she was very likely to die that day and to make sure we were with her at the hospital, where she spent the last 5 weeks of her life.

I am not sure what factors doctors look at when they tell patients when they are likely to die, as I am not a medical professional. But what I do know is that many of us in this situation are fortunate to be receiving very good care in treating and stabilising our condition. We can be helped to live for a very long time, and hopefully there will soon be a cure for all of us.

Sophie x

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Hello

I’m just rereading your reply to me earlier

You are so wise and very knowledgeable..this mbc diagnosis is relatively new to me and I’m really struggling so thank you for your post

Barb xx

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I just have to say.. your posts are very reassuring to me , you explain things so well.. I’m MBC with bone Mets...and when I’m feeling down I look for your words❤️ Thank you

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Like most of the rest of the responses, I try not to look at stats or really anything on the internet as to having MBC. It just usually scares the crap out of me. I have an amazing doctor and I rely on his input and then put it in God's hands. Now saying that is often easier than doing. And you know what, if you have to take an anti-depressant to help you don't beat yourself up over it. This is not easy. I take one and will happily take it the rest of my life if it keeps me emotionally on track. Hugs coming your way.

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I also take an antidepressant. It is part of my “new normal,”.and I have no plans to go off it. Well said. No guilt over doing whatever it is to live your best life.

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Hi Barb!

Let me say this: I was diagnosed with a highly aggressive breast cancer, first time, in 1998. Also my first round was 3B recognizable in 7 lymph nodes. At 48 and assuming I had little time left, I gicused on my 4 young children and went about life the best I could. I survived now 16 years longer than all the women in my family. No BRACA. 20 years later, the doctors tell me I am now stage 4 with a highly aggressive cancer. Well nothing has changed and that aggressive diagnosis no longer frightens me. I have been living with the most aggressive BC for 21 years. So I now think, so what!

My focus now is getting my body in its must healthy state.- not easy! But I believe it is critical to find peace with yourself and learn to see your Purpose in his life. I haven’t found the answer to that yet but I’m on the path. Get back and you should be beneficial

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Hello

You’re incredible for coping all this time..my first diagnosis was 24 years ago with a tiny tumour..no lymph spread..I was ER positive HER positive..now HER negative which is weird that it’s changed...apart from 2 years of zoladex injections to stop my periods I had no further treatment so mine must have been not very aggressive at that time

I’m going to have to alter my attitude as I’m starting to mooch about crying and not very easy to live with..getting posts from you ladies does help so thank you so much

Barb xx

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Yes, the support of all of you during difficult times has been tremendously positive. But also, being able to share positive thoughts and ideas on how to keep us in the best health that we can achieve Is it benefit from this site and the love of all of our sisters.

This time around, I sometimes wonder, if I needed all of that came out with all that radiation in the extensive bilateral mastectomy with tram that I had 21 years ago. I don’t regret it, because it’s done. But the way that I think today is different than it was 21 years ago. I think I was more fearful then then I am right now. I never had an experience in my family with anyone surviving breast cancer so it was very difficult for me to think that I could live in a long period of time with this disease. But now i’d beat their numbers buy close to two decades and I’ve come to different realizations in my life that there are things that we need to learn from being diagnosed with this disease. It’s also very individual as we each have a separate journey. Trying to Discover these things and bring a sense of peace to your soul is a journey and as of itself. That’s right focus today

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Love what you had to say. Thanks for sharing.

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Oh thank God you posted this. I needed to read it. Thank you ❤️

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Barb,

Spend peaceful time, every day, with your whores. Soak up the sun in the energy from the universe and realize that there are things that assist us and bringing that beautiful energy from nature to our bodies. Your horses were so much a part of your life but also your understanding of creation. Be with your horses, don’t feel sorry for yourself that you can’t ride at this point, but understand that you can drive positive energy for healing in this atmosphere

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Hi

Thanks for your kind replies

You’re right about the fear at the first diagnosis..my daughters were only 6 and 2 and I was so scared they wouldn’t remember me and I prayed that I would see the millennium..well I did ( obviously!) but this time because it’s metastatic I’m fearful in a different way.. but I’ve seen one of my girls get married and the other one due to be next year so hopefully I’ll be around for that and maybe a grandchild..who knows?

All the best

Barb xx

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Oh my Goodness--it was supposed to say horses!! too funny!!

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Lol..I knew what you meant..how funny!

Barb xx

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I was talking into my phone and never checked the spelling!!

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That was too funny. Thought it was a word with a different meaning until I read the whole thing. A really good laugh.

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Yes, a similar story for me, my children were 18, 8, 5 and 2. God keep us here for them and maybe something for us--well I guess that would be them!! My older daughter is married 11 years but they can't seem to have children so that boat has sailed and my younger children not married--29, 27 and 22. I decided that I MUST picture myself there at their weddings and my grandchildren. I believe that you have to have those goals to stay alive. So, you have many blessings to yet experience.

Where in UK did you say you live?

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And yes, the metastatic diagnosis was really hard, mine 12 months ago so easier now.

I think mainly because initially, it signified the end is near. I am not so sure now.

I am doing tons of alternative and complimentary things but wondering if you looked into the Budwig diet? I am looking into that now to add to my many things.

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I’m researching Rick Simpson. Pharmacist told me his wife was diagnosed 5 years ago w ovarian. She cut sugar out and did Rick Simpson. “Now she has no stress when they measure her markers. She knows it will be fine”

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Now that’s a typo. Made my night!

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Also, when did you have your original tumor checked for HER 2? It could not have been 24 years ago as they were not doing the check on HER 2 yet at that point.

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Hi

Well my oncologist told me that about the HER 2 changing..maybe I’ve misunderstood..I guess it doesn’t matter now as I’m on the right treatment

I live in Nottingham

I’ll Investigate the Budwig diet..not heard of it..sounds interesting

I was diagnosed in April this year so still panicking..all too new..I knew there was something very wrong with me but just carried on as you do!!.. it was the fractured vertebrae that made me have an X-ray then the mbc were found

All the best

Barb xx

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I hear ya regarding the waiting room situation. So I had a mental break down on my oncologist at one of my apts because I was so sad seeing these patients knowing one day I will probably be there. So she makes me her first apt so I can get in and out. Plus I know these patients need much more attention than I do.

As for the stats my oncologist told me not to pay attention to them because they are for all breast cancers combined. So the survival rate is for ER/PR+, HERS+, triple negative and positive combined. They are also old stats before the newer drugs came out. She is treating mine as a chronic disease. Luckily my treatment has worked for almost 2 years. Still have my weepy days and the why me’s but in the long run we gotta put on our big girl pants and figure out the best way to handle it.

Best to all of you!

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Early on in this whole cancer thing, I noticed how sick some of the other patients in the waiting room looked. But my take on it was very different than yours. It made me giggle inside that I was probably the sickest patient there, with metastatic cancer after all, yet I looked like the healthiest! So crazy and ironic. I just have to find humor every where I can in all this and there certainly are ridiculous parts! Diagnosed at stage IV so I get to keep both breasts....huh? Doesn't that seem silly!

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Hi

I sort of know where you’re coming from..I can’t be like you though and smile inside..I’m still feeling scared

However I do look well especially glam as have had hair extensions as my hair is a bit thin and I didn’t want it short (yet!!)..so I don’t look ill at all..long may that last as I’m quite vain which is a bit silly I know as there are far more important things to worry about

Barb xx

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I look like myself. No one would know that I have stage 4. Part of the waiting room issue for me is I feel guilty looking healthy even though this dreaded thing is a part of and there are some patients who are so sick and are just looking for some hope.

I’m grateful we are still doing what we want and looking fabulous😂😂

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Yes the whole waiting room scenario is just horrendous..I’m often on my own as it’s a small cancer care centre attached to a private hospital so not very busy which I prefer then I can fool myself that I’m not in a cancer clinic..sitting with really poorly people upsets me ..I’m upset for them and worried I’ll be one of them soon..hate it all

B xx

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I had a meltdown during chemo 4 years ago. A social worker pulled back the curtain and asked how I was doing. Well I told her and also told her what I thought about doing. I became quite the center of attention, but they decided I was safe enough to wait for my psych appointment. Also my husband was with me. Yes, big girl pants all around and just stubborn drive to get up each morning we’re given. 💫

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I don’t know...maybe. But my metastasis was discovered almost accidentally. If it wasn’t discovered, I might have made it to the 5 year mark. I was 20 months in on stage 2 before it went to bones. Found on a Pap smear.

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Hi Barb. Please will you read Jane McLelland’s book, How to starve cancer. You can download it fron Amazon. She also has a FB page. I have the same diagnosis as you. I’m in France and getting excellent conventional treatment but I do think the approach here is slightly different from the UK’s. Maybe just difficulties with language but I don’t find them as forthcoming as I would like about diagnosis, scans etc. Jane’s book has put me on a different but complementary path of using old drugs but in a different way alongside current treatment. It’s easier to read about than for me to explain fully and I found it food for thought and hope. I do hope you feel better soon.

Best wishes

Diana

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Hi Diana

This is so weird..I ordered that book yesterday and it arrived this afternoon..from Amazon

I shall look forward to starting to read it later tonight

Thank you

Barb xx

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That’s amazing, Barb. It would be great to hear your feedback later on! Xx

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Hi there

I’ve read that book and I agree that there’s some sense in it..I already take anti inflammatory pills but will add aspirin and I take curcumin and will add berberine to my supplements as they’re relatively harmless

However the author has a different cancer to mine and there are so many factors to consider..also she could have just been one of those patients that gets well and nobody understands why and it’s nothing to do with what supplements/drugs she took

I’m a bit sceptical about overdoing the diet thing as it’s easy to blame yourself if it doesn’t work..

The sugar hypothesis annoyed me a bit as our bodies will convert protein and fat into glucose even if we stopped eating sugar/carbs..these are complex functions which our bodies quite happily do on their own

It was an interesting read though and I’ll change a few things in my diet but a little voice tells me it’s probably too late and I’m better off taking the hormone treatment recommended for me by a professional oncologist not a physiotherapist

Barb xx

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Hi Barb,

Sorry to butt in, but are you referring to the book by Jane McLelland? Did she say that sugar fuels cancer? I have heard that a lot and am not convinced that is the case. But I have still cut back on sugar just to be healthier. With those of us who are ER+, it's oestrogen that is responsible. When I read about those who have beaten cancer, I do wonder and am a bit sceptical about what they have to say. We are all so different and their approach may not work for us. So I weigh things up, do my own research, talk to my GP, oncologist, oncology nurses, pharmacist or others who are educated in this field and who can help.

I have ordered a book from my local library which is ready for collection. It's entitled: "The cancer whisperer: How to let cancer heal your life" by Sophie Sabbage. I'll pick it up tomorrow.

Sophie x

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Hi Sophie

Yes the Jane Mclelland book..like you I’m sceptical about these books telling us how they or other people ‘cured’ their cancers with various mad diets/supplements..I’m sorry but I’ll eat healthily and follow the professionals who have had years of dealing with patients..as you said our er positive mbc is fuelled by oestrogen!!

Also although Jane McLellen probably means well and wants to help people..she’s also making a lot of money as well!!

Just my opinion

Barb xx

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Hi Barb,

I think you're right. The author probably means well, but how can one person speak for us all? As you say, she's also earning money to promote her ideas and theories. So when I read books on cancer, I don't believe everything I come across.

Sophie x

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