Calling all triple negative breast cancer patients in the UK
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Happy New Year to everyone
Hello everyone
I am just popping in to wish everyone a Happy, Healthy, Stress free New Year.
Thank you all for making this thread what it is.
Best wishes
Sylvia
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Hello Michael
It is always nice to hear from you.
I am not fond of winter either and this year the past three months have seemed quite long and I have got fed up with the long winter evenings. Yesterday we had a lovely sunny day and Raymond and I spent hours outside. We did a lot of sweeping up of leaves and then went for a walk around where we live. The seafront was absolutely full of people, many of them sitting outside the cafés and pubs. There are lots of dog walkers in Exmouth and out of season they are allowed to walk on the beach, so that was very busy as well. We tend to avoid the seafront.
We usually spend New Year at home. Most of the family we have left are in Essex and we do not tend to go there much now. I have lots of cousins but they all have children and grandchildren so are kept very busy.
I do hope you will have a happy and healthy year in 2015.
Best wishes.
Sylvia
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Hello everyone
I thought I would start posting some of the most important points I have just finished reading in the book entitled P53 The Gene That Cracked The Cancer Code by Sue Armstrong. It is a book well worth reading for those that want to be informed about cancer and genes.
Each chapter has a useful paragraph at the beginning which sums up what the chapter is about. The first chapter is summed up as follows:
"In which we learn that cancer is more than 200 different diseases, but they all share some common characteristics – the most important being that, if P53 is functioning properly, a cell cannot turn malignant."
My comment on this is why are we not all being tested to find out whether our P53 is functioning properly or whether it has been turned off.
I saw on one of the threads that someone had said she tested fine for P53. That was in the US. I do not know if this happening anywhere in the UK.
It would be nice to have some feedback on some of the information I post instead of just people viewing. We need to know what goes on.
Best wishes.
Sylvia
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Sending New Year wishes to everyone and hoping that 2015 will bring health ,peace of mind and happiness
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Wishing everyone a Happy New Year!
The New Year brings a chance for more knowledge and a cure to arrive for our community and for other types of cancers.
Thank you all for providing such passion, strength and wisdom to this forum.
Wishing all of you peace and comfort in the New Year, and to all of you going through treatment or follow up appointments soon, sending many prayers, you'll be in my thoughts.
To all newly dx'd members please know there is life and living beyond a diagnosis. Also please be your own advocate when approaching your medical team to ensure you get the treatment you expect and the answers you need. There is outdated info on the internet and if you come across anything you read that is disproportionate with what your doctor said, refer back to your doc. TNBC was first classified in 2005 but there are many survivors from dx dates before that.
And lastly in the New Year, as you set goals for your survivorship, start with reasonable measurable goals and from there you can add on. Don't overload with so much change at once that it becomes impossible to be victorious. You can build upon the small victories to achieve your bigger ones.
Spread knowledge, awareness, love and be an inspiration in 2015.
Love you all and Happy New Year!
xoxo
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hi Sylvia and everyone
I hope everyone had a wonderful New Year's Eve and have a happy and healthy 2015,
Sylvia my operation date is the 5th jan this coming Monday, getting the jitters the closer it's getting but I'll still be glad to get it over with, I'm going to be off work for a minimum of 6 weeks and I've been informed that I will receive no pay while I'm off as I have used all my sick pay that I'm entitled to, things like that just add to an already stressful situation, luckily I have some savings that I can live on while I'm off but i don't know what I would do if I didn't.
I went out last night to our own comedy night which is our biggest show of the year and was a complete sell out and went really well, unfortunately I wasn't feeling to well and came home straight after midnight, I think I might have a chest infection....will they still do my op on Monday if I have a chest infection?
I was interested to read about the p53 gene, if they can test for this gene being faulty or switched off why don't they do this as standard? Does it explain whether anything can be done for those who test positive for this faulty gene? It does seem like we are getting slightly closer to finding out what causes cancer and hopefully developing a treatment or a cure for it
Take care
Gill x
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Hello linali (Lindsay)
I am just popping in to say that I hope the New Year 2015 will be a happy one for you and your family.
I hope it will be a very healthy one for you and one that is free of pain. I also hope that all will continue well at the centre.
I was thinking of you last night as I happened to have a look at BBC4 at just after 8pm and found they were doing a programme about the Irish song Danny Boy and talking about how it came about at the beginning of the 20th century and especially at the time of World War 1. It is one of my favourite songs and the programme was truly interesting. There was information about the fight for Irish independence from Britain, how it was eventually won but the six northern provinces were not included. There was all about the immigration of lots of Irish people to America and how the song went with them and spread in the US, but was interpreted in different ways, such as blues and jazz. There were so many variations in musical interpretation. However, for me, none came close to Irish tenors.
Thinking of you and sending every good wish for the New Year.
Sylvia xxxx
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Hello InspiredbyDolce (Debra)
Thank you so much for your latest post.
I would like to back you up in what you said about newly diagnosed members. There is definitely life after diagnosis and all of us on the thread are proof of that. To those who may start the year with a breast cancer diagnosis, please know that yo can deal with it and come and join us so that we can support you and get you through it. Do not make this a lone journey.
I also want to back you up in what you said about patients being their own advocate. I feel very strongly about this and I was certainly my own advocate. New patients have to remember that it is their own body and they have to make sure they get the best treatment. They must ask lots of questions and get lots of answers. They must be informed patients.
I agree with what you said about outdated information on the internet and all the scaremongering. It is a good idea to come to a reliable source such as bc.org.
I was most interested to read that you said TNBC was first classified in 2005. That was probably in the US because I was diagnosed in June 2005 and my consultants just said I was oestrogen and progesterone negative. It was months later that I was told I was HER2 negative and that to be HER2 negative was a good thing. On diagnosis I was told the prognosis was poor because tamoxifen was of no use to me. I think I was the one who found information about the term triple negative breast cancer and started asking questions.
It is certainly true that there were patients who were triple negative long before 2005.
When tamoxifen was first introduced it would been given to all breast cancer patients and those termed tamoxifen failures could well have been TNBC. I have a friend here who had breast cancer about 25 years ago, had a lumpectomy and radiotherapy but nothing else. Given her young age at the time age it was probably TNBC.
I think what you said about setting goals is very sensible.
Take care and all the very best for 2015.
Sylvia xxxx
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Hello InspiredbyDolce (Debra)
Thank you so much for your latest post.
I would like to back you up in what you said about newly diagnosed members. There is definitely life after diagnosis and all of us on the thread are proof of that. To those who may start the year with a breast cancer diagnosis, please know that yo can deal with it and come and join us so that we can support you and get you through it. Do not make this a lone journey.
I also want to back you up in what you said about patients being their own advocate. I feel very strongly about this and I was certainly my own advocate. New patients have to remember that it is their own body and they have to make sure they get the best treatment. They must ask lots of questions and get lots of answers. They must be informed patients.
I agree with what you said about outdated information on the internet and all the scaremongering. It is a good idea to come to a reliable source such as bc.org.
I was most interested to read that you said TNBC was first classified in 2005. That was probably in the US because I was diagnosed in June 2005 and my consultants just said I was oestrogen and progesterone negative. It was months later that I was told I was HER2 negative and that to be HER2 negative was a good thing. On diagnosis I was told the prognosis was poor because tamoxifen was of no use to me. I think I was the one who found information about the term triple negative breast cancer and started asking questions.
It is certainly true that there were patients who were triple negative long before 2005.
When tamoxifen was first introduced it would been given to all breast cancer patients and those termed tamoxifen failures could well have been TNBC. I have a friend here who had breast cancer about 25 years ago, had a lumpectomy and radiotherapy but nothing else. Given her young age at the time age it was probably TNBC.
I think what you said about setting goals is very sensible.
Take care and all the very best for 2015.
Sylvia xxxx
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Hello Jackpot (Gill),
Thank you for your post and for letting us know the date of your hysterectomy operation. I do hope all will go well. It will soon all be behind you and I hope you make a speedy recovery. I think, judging by what friends who have been through it have said, six weeks is pretty standard. I do not think you can drive for six weeks or lift anything heavy.
I was sorry to read that you have been told you will receive no pay while you are off work because you have used up all your sick pay. You should be entitled to sickness benefit from the government, probably through Work and Pensions department, but I expect that is going to be bureaucratic and not very much. If that were me I would be going to Citizens Advice or my GP to find out about receiving Disability Living Allowance or whatever they are now calling it. My understanding is that cancer patients are entitled to this. It is based on needs arising from your illness, and is not means tested and it is allocated whether you are working or not. It is worth a try. You could also ask at the hospital about all this, especially if you have a cancer charity there.
I was very interested to read that you had your own big comedy show and thrilled to know that it was a complete sell out. What a pity that you had to come home straight after midnight as you were not feeling well. You need to find out whether you have a chest infection and need antibiotics, as I would not think they would want to operate if you have a chest infection. Let me know what happens.
I was so glad to know that you found the information about the p53 gene interesting. It motivates me to post information when I get feedback. I do so want us to share everything. I do not think it explains whether anything can be done at the moment for those who test positive for this faulty gene. It is not standard as yet to test for it, but I suppose those who have other faulty genes (BRCA1&2) discovered when they have been referred to a geneticist, would now be able to find out about the p53 and be advised of any possible follow up. I have read information about how they can now analyse quite quickly the whole genome in people. I know from a past conversation at the hospital with a doctor, when I asked about a possible cause of my breast cancer and breast cancer in general, the p53 gene was mentioned and the fact that it can be turned off through a process of methylation (methylation is something I find hard to understand). All this was mentioned back in 2005 so they have had nearly ten years to work on it. How do the experts turn p53 back on once it has got turned off and allowed cancer to proliferate? (Perhaps Tom can enlighten us in simple terms).
Take care, Gill, you have three days to go. Watch anything that makes you laugh and takes your mind off it all.
Last night I watched Jason Manford's show in which he was reviewing 2014. It was at 9pm on ITV and entitled A Funny Old Year. It was absolutely hilarious. The night before on BBC2 I watched Charlie Brooker's 2014 Wipe. Charlie Brooker is a great satirist and I watch every programme of his that I can. He was casting a withering gaze over the biggest and most bizarre events of the past twelve months in the news, film, TV and social media. I really loved the part where he was commenting on the tipping of a bucket of iced water over your head as a mark of moral seriousness!
I am going to make sure I try to laugh a lot in 2015. Years ending in 5 have not been good for me going back many years. I am not superstitious and am very rational and logical but I shall be glad when 2016 arrives and I have been (hopefully) told by my oncologist that I am in the clear and can after ten years be discharged from the hospital.
Best wishes to you and yours and may all your hopes and dreams be realised in 2015.
Fond thoughts.
Sylvia xxxx
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Hello everyone,
I am posting the quotation that is underneath the summary paragraph of chapter 1 on the p53 gene book by Susan Armstrong.
"Tumours destroy man in a unique and appalling way, as flesh of his own flesh which has somehow been rendered proliferative, rampant, predatory and ungovernable. – Peyton Rous".
I shall now give you what chapter 2 is about.
"In which we hear a) about a virus that causes cancer in chickens that can be passed on to other birds in the DNA and b) of the discovery of the first genes responsible for driving cancer – the so-called oncogenes".
Throughout the book, which has these introductory paragraphs, there is a quote by a named person. This is the quote for chapter 2.
"Now more ambitious questions arose...Might all cancers arise from the wayward action of genes? Can the complexities of human cancer be reduced to the chemical vocabulary of DNA? - Michael Bishop".
This book is highly readable and highly understandable. I do hope some of you will read it so that we can have good discussions.
It is very important to keep our little grey cells working at full capacity.
With fond thoughts to all of you.
Sylvia xxxx
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Hi everyone and a very happy and healthy new year to us all. I went to a friends house last night to see the new year in. It was just my friend her husband and me and thats how I wanted it. We all raised a glass to my Colin at midnight. Colin died suddenly 18 months ago, just 5 months before my diagnosis and this time of year is always very poignant.
I must admit to feeling low generally as many of us probably will at this time of year what with remembering when we were carefree of this diagnosis. My family seem to think that I should be over 'all this' now and I must admit i am anything but. The muscular and joint pains are problematic and altho paracetamol is effective, I really would rather not take any tablets.
Hey ho I will try and look on the positive side, think its just this post christmas new year time which sharpens everything.
I will be thinking of you Jackpot Jill what with your upcoming op. Perhaps try and get a gp appointment tomorrow and start some antibiotics for your chest infection?
Thanks for your info on the science behind our illness Sylvia and Tom. I will perhaps do a little reading around it. I was a nurse until 14 years ago when I retrained in social work, so I am interested in the medical side, but also love the general emotional support we share.
Margaretmaryhope I hope all is going ok for you
Love Sue xx
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Hello Suewirral,
I was glad to know that you were able to go to a friend's house last night to see in the New Year. This time of year is very difficult and we all start to think of those who are no longer with us. It must be very difficult for you and you must miss Colin terribly, especially as he died suddenly and you had no time to prepare for all this. I do hope things will get better for you with time.
I can understand how you must be feeling low and can only say just try to focus on the time that you had with Colin and treasure that.
I do not know how you have managed to cope with all the grief from this and a diagnosis of breast cancer, not to mention all the anxiety and worry with your daughter. You have come through all this and it shows just how much courage you have and how strong you have been. I suppose none of us knows our strengths until we have to bring them to the fore.
It is true that we probably all tend to think of our lives in terms of before and after diagnosis. I know that I do as I had never been ill before. Most of the time it is at the back of my mind now, but if I focus on a Monday and Tuesday in June of 2005 when I was diagnosed one day and spent the day at the hospital the next, it is all so clear and I can still feel the fear and anxiety. Since then I have always lived my life one day at a time, never take the future for granted, and have learned to expect the unexpected.
I can understand why your family seems to think that you should be over everything by now, but those of us that have lost loved ones suddenly and have gone through breast cancer treatment know exactly what you are going through. As far as cancer is concerned, there is no point in trying to explain what it does to you to others that have not been through it. I have helped a few friends here through cancer treatment, just by phoning them or talking to them in person and helping allay their fears and anxieties. I can understand these feelings because I have been through them.
As for death and grieving I saw a much loved and respected older brother die of cancer within three weeks of diagnosis of cancer at age fifty-six. I was with him when a consultant told him that he had not long to live and it was like a big hammer going through my head.
Take as long as you like to work through your grief and to work through the psychological effects of a cancer diagnosis. The experts deal with the treatment side but, not having been tnrough it themselves, I do not think they understand the psychological effects.
I do hope the muscular and joint pains will get better and I do understand your reluctance to take pain killers. I saw in my natural food store here in Exmouth that Arnica cream is as good as Ibuprofen cream in alleviating joint and muscular pains.
I do hope the New Year will be a good one for you and that you will be able to look forward to the future with optimism.
Remember the words of the song by Eric Idle, " Always look on the bright side of life". I find it always cheers me up.
Fond thoughts.
Sylvia xxxx
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Sylvia thanks so much xx I have reread your response a few times and it is such a lovely comfort
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Hello Sue
I am so glad that I am able to help you. I hope all goes well.
Love
Sylvia xxxx
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Hi, Suewirral
I want to wish you a happy New Year and so sorry you lost your Colin not that long before the last one. These big holidays bring such sweet and sad memories. I am always rather glad when they are over.
I know what you mean about friends and family wanting all this to "be over." I think they just don't realize that for us it will never really be over, but will always be part of us even if we become long-time survivors. I wanted to ask how your muscular and skeletal pain is manifested. I have been plagued with these same problems since July, while I was still on chemo. I am getting better, still getting acupuncture and physical therapy. It is slow progress, but I am happy for any progress. Like you I was reluctant to take all the many pills I was offered. I do take a half a pain pill in the evening if I am too achy for rest. But things are looking up pain-wise. I did have to get a syringe full of fluid removed from my mastectomy site the other day, that made that spot feel better anyway! Now I hope it stays gone, or they will have to put a drain in again.
I hope you and your daughter will both have good fortune in the New Year, and see you around here soon!
Best wishes, Mary
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Hi Mary and thank you for your kind words x
My muscular/joint pains started up so slowly I am not really sure when they started probably towards the end of my chemo (which ended last July) and I just thought they were a side effect that would go away. However now I find it difficult to stand from a sitting position but once I am standing I am OK and can walk but find going downstairs hard as my knees feel stiff. I also get aches in my shoulders, elbow and thighs especially if I have been busy or lifting anything. After Christmas day for example, I was so achey after helping my son cook dinner and running round after my granddaughter. As I say, the pain is not really bad but it is starting to get on my nerves as I just want to feel well again. This chemo, the gift that keeps on giving as they say Haha!!
As you say Sylvia 'always look on the bright side of life'.
I spoke to my daughter in law yesterday and we reminisced about the fun times we had 2 years ago at new year when Col and I visited my son and his wife and played daft parlour games. Happy times and yes I will be happy again as I hope we all will find happiness this year
Love Sue xx
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Hello everyone,
I was wondering if any of you saw the headlines about cancer in a lot of the newspapers last week. I read the article in the i paper and did not quite know what to think. What the article was saying was that two thirds of cancers are really just bad luck and that only a third can be attributed to lifestyle and genes.
I listened to two interviews on Radio 4 by two different cancer experts and the same information seemed to be coming out. These interviews are available on the BBC i player.
What do you think? Even if two thirds are down to bad luck I still think that a healthy lifestyle must help and that an unhealthy one is no good to us and will contribute to chronic illnesses like diabetes 2 and heart disease. I do wonder how assumptions can be made about genes when we do not have mass screening for faulty genes.
What do you think, especially Michael and Tom?
Best wishes to all.
Sylvia
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Hi Sylvia and everyone
I did read about two thirds of cancer being just bad luck and to be honest it made me laugh, after decades of research and billions of dollars/ pounds that has been spent on it, this is what they've come up with..."bad luck"....
This is your 10 year (discharge year) so hopefully 2015 (ending with a 5) is going to be a good year for you, oh and the song that always makes me smile and feel better is "three little birds" by bob Marley
Sue I completely understand when you say family and friends think you should be over it now and back to normal now your treatments over and you are anything but....I'm far from over it either and don't think I ever will be though people do say the longer it gets the less you think about it but lets wait and see,
I also have painful knees since treatment ended so I think there seems to be a pattern forming there, but with the joint pain, the nerve damage, the gynaecology problems I have, would I go through it all again?......you bet I would.... Just happy to be alive...
Just going to pack my bag for hospital now and get this house cleaned and get beds changed as not sure when it's going to get hoovered again haha, not being able to drive is going to be the worst thing which is pretty much going to put me under house arrest.....boredom is not good
Take care
Gill x
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Hi, Sylvia
I did read about many cancers being laid at the feet of bad luck, I noticed they also included some cancers under the "lifestyle" heading. And I noticed they did not classify breast cancer anywhere, maybe a combination? But yes, a healthy lifestyle surely helps with everything, unless you go out and get run over by a car while getting your mail; which happened to a lady I know not too long ago. And I agree with Jackpot. What a chuckle after all the money and time spent on research to say "ahh, bad luck!"
I had to have fluid drained from my mastectomy site last week, if it comes back the surgeon will put in a drain for a while. If that doesn't work she said she can go back in and actually rough up the interior surface of the chest wall so fluid can absorb. She said after the fluid is present for a while the skin becomes so slick it doesn't absorb. I hope something works, it felt much better with the fluid out of there.
Husband had to go into hospital Friday to have fluid removed from between chest wall and lung. Not too bad, a quick procedure. And a great relief for him to be breathing a bit better.
Hope your New Year is good so far!!
Best wishes to all,
Mary
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Hello All,
Sorry I disappeared for a while, there was a lot going on and think about and I didn't want to think about anything else.
I was due to have a single mast on Dec 17th, thanks for remembering Sylvia (!), but prior to that I did write a letter to my surgeon urging him to reconsider and remove both breasts at the same time. I had a further consultation with him and he said that while it was an option, it wasn't one that he would choose due to the risks of the wounds breaking down after chemo, however, his colleague was willing to see me regarding this (she has only ever specialised in breast surgery and she would be the one that would eventually do the reconstruction anyway). I did see her and went with her, to be perfectly honest I think it was fate, every single nurse that I have come in contact with has told me that she is the best of the best and they would want her over everyone else! So, to cut a very long story short, I had a small op on the Friday before Christmas to check my lymphs and they all came back clear YIPPEE!!!! I had the double mast on December 23rd and was home on the 24th with the drains. She has done an amazing job. I had seen some photos prior to the op and was prepared that it wouldn't look too good, but mine looks great! Totally flat, this is ok despite originally being a 36 FF! I look dead skinny now.
In terms of recovery, just very sore and extremely tired. The drains were a necessary inconvenience that only lasted six days and now tomorrow I will be seeing my brilliant BS for the pathology results of the breast. I am hoping that it is a complete pathological response, but given the size, I, nor my doctors expect it will be. However I did have a scan prior to the lymph surgery and I asked her to scan my breast and she said she couldn't really see anything. It was 12cm each way......
Having neo-adjuvant therapy led me to thinking what stage do I take? Do I take clinical stage which is the diagnosis stage or pathology stage which is after surgery? When you look for statistics, different stages give differing percentages obviously. I did find a trail from America who take this into consideration and they have produced a calculator: www3.mdanderson.org. I haven't gone as mad on stats as I used to but I thought it was interesting.
Christmas Day was all about my four children and just watching them be really happy with their piles of toys. I couldn't really do much but managed to sit at the table for ten minutes to eat and then back to sofa.
Sue - glad to hear the news about your daughter, I was thinking about her.
Jackpot - hope the surgery went ahead today and that you won't be too long recovering.
Jacqueline - don't worry that you haven't got a complete path res, just look at Sylvia! And that trial you have been recommended is a good thing, I've had a look at it too and if I have anything left I want to go on it too. You have only being recommended it as you have something left that they can measure in the laboratory setting, that's how I have read it anyway.
Tom - reading the statistics from the Avastin trial (me and stats again) really gave me a lift. I have always known that the stats for TN were out of date so if that trail has brought up one good thing it's bringing us up to date with numbers (I do understand that the trial itself wasn't a great success). I have been reading up on your links and you do give us all lots of worthwhile information. Also Tom, I had a strange cough all the way through chemo, I think it's a side affect. I also had strange pains and for a while I thought I had liver cancer. It's just chemo. RE the wig, my 2 year old makes me laugh. I keep my wig on a head in my bedroom when I am not wearing it, which he is really scared of, and if you ask him where is mummy's hair he says upstairs! And when he wakes up in the morning he says morning to me and then gingerly says morning to the head!
Sylvia - I know you will ask why a double mast! To have one very large breast left behind was going to be uncomfortable and physically unappealing to me. Thinking about having to wear a huge, heavy prosthesis was really getting me stressed out and as I was going to eventually have it off at some point anyway, why not at the same time? The docs did see the reasoning behind my thinking mainly because I was just so big in the chest area. I feel like a new person now and can wear what I want! New wardrobe I think.
So I will start radio sometime early February, but I will post before then with the news of the pathology.
Marymargaret
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Meant to ask, this indol 3 carbinol, I was going to buy it, but when I read that last comment about it making it come back in animals who already had cancer, I didn't. What are everyone else's thoughts about this?
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Hi All
Happy new year to everyone! Here's to a very healthy new year for all of you lovely ladies.
Quite a few posts to catch up on! Firstly my wife is fine. There was nothing on the chest x-ray for her PICC line. I guess the next few years is going to be filled with panic with every cough, ache and pain. She is now on her third dose of FEC one more to go before they start Taxol. We are having the BRCA screen in a few weeks. If she is carrying a mutation there is also talk of her having some carboplatin after the birth of our baby. On that note, baby is fine, normal size and he is kicking loads.
Our little girl is all over chicken pox and her cough. My girls have passed the cold and cough onto me, but I'm not complaining about anything! Watching my wife go through chemo is very difficult, I would and have protected her from everything that I can, I just wish I could take the drugs for her. But its a new year, we're going to get through this and come out the other side!
Sylvia - once again thank for all the wonder posts, you deserve a medal. I'm sure by keeping this thread alive you and the other ladies that have been through this are keeping the spirits of many women (and I'm sure a few men) up. xxxx
To try and address some of the comments made and to update you all with some recent research:
Firstly studies are being published on TNBC at a fast rate! There is some significant research going on at present time! To draw your attention to a few studies. (I will post the pubmed link - if anyone wants a copy of the actual journal paper please ask. Pubmed is a search engine for published science papers).
This study is from Turkey and covers 561 TNBC patients between 2000 - 2010. http://www.ncbi.nlm.nih.gov/pubmed/25536589
Overall disease free survival was 76.2% for 10 years. However, a large number of patients (~35%) presented quite late, when accounting for this and the 10% of patients who refused chemo and who had pre 2005 chemo regimes; 10 year survival increases to over 87%. Take home message is that overall survival rates are dramatically improving all the time and will continue to do so. One oncologist where I work thinks that for women diagnosed with early stage I/II TNBC since 2010, survival rates are going to be 90-95%.
This study published in 2012 adds weight to that comment: http://www.ncbi.nlm.nih.gov/pubmed/22392492?dopt=A...
TNBC patients with tumours 1cm or less have survival rates of 95% plus.
Also don't forget the data I showed you from the BEATRICE study - the current updated data (and keep in mind these are patients treated post 2007) is giving overall survival rates of 90% plus and that's combined for all stages.
The other striking thing has been the number of papers published with focus on lymphocytes in the presenting tumour. There is now clear evidence that the greater the lymphocyte infiltration the better the clinical outcome. Several high profile TNBC research groups want clear guidelines on reporting this factor to help inform the patient and to also guide therapy. For example some patients probably require less aggressive chemo while other would benefit from more aggressive therapy or different cocktails of drugs to begin with. The immune system rarely gets involved with low grade cancers (the cells look too normal) but for grade 3 cancers the cells look different enough for the body to start attacking them. The key to treating TNBC is to destroy everything from the outset and although aggressive, those grade 3 cells are easier to treat with chemo and seem to invoke the body's own defence system. Working out how and why and how to harness this is going to be crucial.
Some other recent studies which has stood out for me, highlight the use of "gene signatures" to predict prognosis. Again bringing this through to clinic would help guide chemotherapy treatment.
Medicine is getting on top of this! Ignore the scary headlines, this ain't the aggressive deadly disease some headlines might have you believe. And in fact its the aggressiveness that is proving to be the downfall of TNBC.
Ok, I've just realised the time and need to get back in the lab. I'll get some stuff posted to explain p53 in more detail. I've also had an idea which I'm pitching to several pharma companies in a few weeks. Its to give cancer cells chicken pox.
This is the concept - Herceptin works by binding to the HER protein on cancer cells. The drug is actually an antibody. The slight problem is that Herceptin and many other antibody therapies do no always work or work as well as they should. Myself and some colleagues think (well we have data to show this!) that when we make antibodies for clinical or research use, we make the antibody against a pure clean protein, however when presented on the surface the target that the antibody binds to isn't always so clear. if you imagine a single cell like a ball covered in grass and in that grass are lots of other objects. That grass and other objects get in the way sometimes. So we think that using small molecules (called inhibitors) to target proteins on the cell surface might be better, since they are smaller they can avoid some of the other targets and cut through the grass. Also many cancer cells and in specific TN cancer cells make proteins and put them on the cell surface to help them invade other tissues. The idea is to inhibit those proteins, nothing new there, however what we are proposing to do is to link our small inhibitor molecules to the parts of the chicken pox virus that invoke an immune response - and just like my daughter has - most people have had chicken pox, are immune to it and if they get the virus again kill its straight away. So we have a molecule that binds to a protein on the cancer cell surface and inhibits its function, and is also decorating the cell with a protein that the human body already has antibodies made against it. To prevent the drug itself being targeted by the immune system it will be designed that only once the inhibitor part is bound to the cancer cell does the chicken pox protein become exposed. I'll let you know how my sales pitch goes!
Best wishes and warm hugs to all.
Tom
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Hello Jackpot (Gill),
I was glad to know that you had read the article about two thirds of cancer being just bad luck and that it made you laugh. As you say, all that research and money and then to come up with bad luck as the main factor. I do not really believe this and I think such headlines are very bad, misleading and smack of sensationalism. People will think that they do not have to do anything to keep healthy. There has to be a malfunctioning body for illnesses to hit a person and there could be many reasons why a body malfunctions and the result is illness. It is the same with headlines about cancer being a disease of old age and yet so many young people are getting it. I think that healthy eating, keeping physically and mentally active, avoiding stress and overwork, and having social activities help to keep us healthy and ward off chronic diseases. I think that our society is too medicalised and I look to food for my medicine.
I am really hoping that nothing will happen this year to stop my ten year discharge.
I am not familiar with "three little birds" by Bob Marley but I shall certainly have a look on the internet to find it.
I do hope all has gone well today with your surgery and that you will make a complete recovery.
Thinking of you.
Sylvia xxxx
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Hello maryna8 (Mary),
I was glad to know that you had also read about cancers and the bad luck factor. I still think there will be a reason, even if it is not a direct one, for a person developing cancer of whatever kind. We all now know that lung cancer is caused mainly by smoking, but what is the explanation for people developing lung cancer who have never been a smoker or near a smoker? Until everybody is tested genetically for cancer, I cannot see how the experts can say that only one third is due to genetics etc. That reminds me of my doctor who once told me that an over active parathyroid was rare and that I was the only person he had seen with this in all of his career and he was nearing retirement. I told him that I thought it was more likely an over active parathyroid disease was underdiagnosed because it did not form part of a routine blood test.
I was sorry to hear that you had to have fluid drained from your mastectomy site last week and I do hope it does not come back and that you will have to have a drain put in for a while. I hope that will do the trick for you. Do we know why fluid builds up around a mastectomy site?
I was sorry to read that your husband had to go into hospital to have fluid removed from between the chest wall and the lung. What was causing this?
Thinking of you and sending best wishes.
Sylvia xxxx
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Hello Marymargarethope (Mary),
I was so glad to read your post and to have you back with us. We do get worried if we do not hear from our friends.
It is so good to know that your surgery is now behind you and that you are very pleased with the results. I was glad to know also that you have a woman consultant breast surgeon who is a specialist in her field. I know I was so glad to be in the hands of a woman breast consultant surgeon and a woman oncologist. I was so at east with them and had confidence in them. They were a dream team for me.
I fully understand why you went for a bilateral mastectomy and can understand the problems of a large prosthesis.
I do hope you get an excellent pathology report tomorrow and that you will let us know what it is. I had a complete pathological response termed no evidence of disease (NED) after my mastectomy so there is no reason why you should not have the same.
I think we keep the statistics that we had on diagnosis, whatever the ensuing results. You should not have any concern about what the stage or grade was if you end up with NED after surgery. Just take it from there. Take it easy and then get through your radiotherapy. After that, get yourself back to a normal healthy state, put everything behind you and get on with as normal a life as you possible can.
I was glad to know that you managed a bit of Christmas. How is your baby?
Make sure you look after yourself through January so that you are ready for your radiotherapy in February.
As for indol 3 carbinol, do not worry about supplements. Just eat plenty of broccoli and all food that belongs to the cabbage family. Food is better than pills!
Sending you fond thoughts.
Sylvia xxxx
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Hello Tom,
Thank you for your post. I have run out of time, so I shall answer a bit later.
Best wishes.
Sylvia
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Hi everyone, its lovely that our thread has been so active over the last few days. So pleased to hear you are doing OK Marymargarethope, I have been thinking of you and your little ones.
Jill I hope you are feeling OK after your op today.
I went back to work after the holidays today and felt sooo tired come half past four and spent the evening on the sofa. I am working at home tomorrow so aim to do a walk in between lap-topping!
Trying to eliminate all the Christmas goodies from the house and get onto a healthier eating plan. I do find it difficult at times to eat healthily even tho I know it is better for me. Any words of wisdom, encouragement, kick up the bum are welcomed!!
Just a word about the pesky coughs that some people have had during chemo. I too had a nagging cough and it was very troublesome when I was around clothes and bedding when I used fabric conditioner so I stopped using fabric conditioner in the wash and hey presto, cough went!
Thanks for your continuing care Sylvia, you really are our guardian angel,
Love Sue xx
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Hello Tom,
Happy New Year to you and your family and a healthy one for all of you.
I was glad to know that your wife is fine and I do hope she will be able to get through the rest of her chemotherapy without too much trouble. As I have said before, the secret is to get plenty of rest, drink plenty of fluids and keep looking forward. It is also good if you can eat small healthy meals. I do not know what patients are being told now, but when I was diagnosed I was told to stay away from salad food and seafood because of the possibility of infection. I was also told to get a flu injection and pneumonia injection and to get any dental work done as it cannot be done during chemotherapy. You probably know all this but it is good to repeat it in case there are newly diagnosed patients viewing.
Going through chemotherapy is a difficult time and yes there are moments of anxiety if a patient feels something is wrong. For peace of mind it is always prudent to get checked out for anything that is causing fear or anxiety.
I was interested to know that your wife is having genetic screening in a few weeks time and that if she tests positive there is talk of having some carboplatin after the birth of your baby. Reading through some of the posts on other threads I have noticed that some patients are getting carboplatin.
I was glad to know that your baby is fine and that your little girl has recovered from her chicken pox and cough, but sorry to hear that you now have it.
I can understand how difficult it is for you to watch your wife going through chemotherapy. Patients need to remember that loved ones go through a lot of fear and stress also during this cancer journey, and especially the chemotherapy part. Focus on the fact that she will get through this and that you will get back to a normal life.
Thank you for your kind words about the thread. It is all of you that make the thread and keep it going. It is so important for newly diagnosed patients facing treatment to know that they are not alone and that they can come here for comfort, support, help, information and encouragement, and that they do not have to be alone.
Thank you for the links. I shall look them up later on.
It is good to know that there is a lot of research going on about breast cancer with triple negative receptors. It is good news that survival rates are improving. I find this encouraging because it means that patients are surviving, after standard treatment, without any further drugs from orthodox medicine. They may be taking other things that could be helping or eliminating junk food and chemicals from their diet as much as they can. I know that I have been drinking green tea ever since diagnosis, as well as eating bitter apricot kernels. I am also very strict about my nutrition. When I say strict I do not find it strict but others may.
I was particularly interested in the number of papers published that focus on lymphocytes in the presenting tumour. Do you think this information is now being conveyed to patients and is it a good or a bad thing? Are we now going to be told that if you have low lymphocytes the prognosis is not so good and thus cause anxiety? I ask this because in 2005 I was told my prognosis was poor because my receptors were negative and not hormonal, thus I could not be put on tamoxifen etc.
I was most interested in what you said about the immune system rarely getting involved with low grade cancers because the cells look too normal, but that it does get involved with grade 3 cancers where the cells look different enough for the body to start attacking them. We know that most TNBC tumours are grade 3. With the immune system kicking in to fight these cells, it may account for why with TNBC we can have long term survival without drugs, after standard treatment has finished. This is why I have always said that not having drugs available after standard treatment can be viewed as being positive about being negative! I am not alone in thinking in this way.
I was very interested to know about the idea that you are pitching to several pharma companies in a few weeks to give cancer cells chicken pox.
Let us know how you get on with your idea of getting chicken pox protein to invade cancer cells and inhibit them. I think I have understood this.
Wishing you all the very best and thank you for your great effort on this thread. It is important that we all try to keep it active.
Best wishes.
Sylvia
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Hello Sue,
I agree with you that it is lovely when the thread is kept active, especially as the posts are always interesting.
I think the answer to eating in a healthy way is just to stick to simple and basic food. I can understand how difficult it can be for some, but do it gradually. If you imagine your evening meal plate, have it arranged in the following way, a little protein (meat, fish or vegetarian) and the rest a combination of vegetables, such as carrots, broccoli and some greens, with a couple of new potatoes or some beans. This is how I eat and most of the time I add a fried tomatoe done in a little olive oil and sprinkled with oregano. I also try to eat some raw food, perhaps a salad or soup and a salad for lunch. I was eating healthily before I was diagnosed with cancer so it has not been difficult. I was not eating meat but I know it can be difficult to stop eating it if you are used to it. Meat and dairy have growth hormones in them, not to mention antibiotics, so I would not touch them.
If you are finding it difficult, just cut down slowly, especially sugar and alcohol. You do not need to do a lot of cooking to eat healthily and I think all this fancy cooking going on in the cooking programmes on the television are not conducive to good health, especially the cake baking ones. People need to move away from regarding anything with sugar as a treat. It is addictive and a poison. Think of putting into your body what makes it function the best. After all, you would not put anything into the engine of your car that would make it malfunction. Basically we need a cave man diet with fewer calories.
I was interested to know about the fabric conditioner. I use a non-perfumed one known as Surcare. You can find it in some supermarkets. I also use non-perfumed Surcare non-biological washing liquid in the washing machine, and Surcare non-perfumed washing up liquid.
During chemotherapy I was very sensitive to smells in general and could not stand to be around anyone wearing perfume or cologne. Even now I try to buy everything unperfumed or fragrance free.
I think that is enough of my preaching for today. I had better get going on various chores.
Wishing you all the very best.
Sylvia xxxx
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