Calling all triple negative breast cancer patients in the UK
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Hello Joliel, Michael and Mary,
Thank you for all your interesting posts. I shall be answering later on today but I was very glad to see that you have all been communicating.
I shall be reading Michael's link 17 today as well.
Talk to you later. Best wishes to all three of you.
Sylvia
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Hi Sylvia, Mary and all
Sorry I was too busy to post here. On Sunday I had the interview and I am happy to announce that I'm now a teacher observer. The interview was pretty hard with 4 interviewers asking lots of questions. After 4 hours wait I was announced that I was accepted. Then we had a training course for 3 hours.
On Monday my friends came to my house for breakfast. In fact , this was the first time we had a breakfast party. They couldn't come for lunch as most of them had classes in the afternoon. It was a great gathering.
I think trying to stay positive is helping me a lot.
Lots of love
Hanieh
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Hi all,
I've missed a lot of posts as it seems and some very beautiful photos. Thank you for sharing them.
I had a BMX last week, it went well. I've mixed feelings about it, of course. Grief for my breasts but a little bit of relief too. After three times BC, I think my breasts are killing me.
Sylvia, regarding your answer on the nutrition question on another thread, thank you very much. It was very helpful.
I'm having the same kind of questions. I'm determined to change the way I eat, even more veggies and fruits. BUT the problem is when I check online for information I get so much contradiction. Walnuts and nuts are good for you, but they contain too much copper and copper is not good for TNBC. Folic acid is good but also not so so good. You get the picture.
Is there a site/book/link that you can suggest? I'm getting furstrated trying to find the right information.
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Hello Joliel,
I was so glad to know that you had good results from your blood tests and that all is well.
Focus on all the positive aspects of your life and proceed with confidence. It is true that breast cancer does have a marked effect on us, but it does not and must not possess us. Of course there will always be the before and after diagnosis, but deep down we are still the same person that we were before. We just have to make sure that we pace ourselves and if we feel things are getting too much for us, we have to slow down and rest.
It is early days for you since diagnosis but breast cancer will slowly diminish in your life. You have already done remarkably well.
You are certainly a well travelled woman.
I am sure we shall all look forward to having some photographs of some of these places.
It is certainly very educational having posts from women (and men) all over the world.
Take care and remain positive.
Fond thoughts.
Sylvia xxxx
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Hello Michael,
I think the Remain side of the referendum will probably win, because they have carried out such a filthy campaign and have all the so called important people, not to mention money, on their side. I hope there is a high turnout and that people on the Remain side realise that they are voting for an anti-democratic, failing institution and will probably live to regret it.
As for the young people of this country, they, of course, have no idea of what our country was like before we got into this nightmare of the EU. We were a nation state with a deep sense of identity that has now vanished. I feel very sad about it all.
I agree with you about Tony Blair. The man is odious. I feel that Jeremy Corbyn is a good and decent man, and that he is not really in favour of the EU. I do not feel that the Labour Party should be on the side of the Remain lot if it is a truly democratic party.
Did you see the documentary last week on BBC2 about White flight from the East End? Try to watch it.
That is about all for now.
Best wishes.
Sylvia
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Hello Mary,
Like you, I have not received an email from Chris Woollams for May. I think he must be a very, very busy man. He is doing a lot of travelling and lecturing in addition to everything else. We are so lucky to have such an enlightened individual.
I do hope everything is going well with you.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
Congratulations on becoming a teacher observer. I had no doubts that you would be successful, as you a very determined young woman. It sounds as though you had to get through a lot of tough questions from four interviewers, followed by the long training course.
What did you do for your breakfast party? It sounds as though you had a lovely time.
Keep on with being positive.
Fond thoughts.
Sylvia xxxx
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Hello MoreShoes,
I was so glad to know that everything had gone well for your BMX.
Give yourself time to recover from the effects of the surgery and from the emotional turmoil that we all feel at the loss of our breasts. Just remain positive and keep looking forward. You will slowly recover and go forward with your life. We are all here to help you.
Do not do too much looking on the internet about nutrition. There are always contradictions about what is good and bad for you and the so-called experts are always changing their minds. If you just have an eating regime of everything in moderation, you cannot go far wrong. I believe in the Rainbow diet and that is what I try to follow.
Fruit and vegetables are the most important food items in a daily nutrition plan, especially green vegetables of the cabbage family. I eat very regularly oily fish, especially wild salmon, fresh or frozen. I steer clear of meat and dairy products. I have Alpro unsweetened almond drink enriched with calcium and vitamins, Sojade organic soy yoghurt with live cultures and Tesco soy yoghurt enriched with calcium etc. For bread I eat Vogel soy and seed bread. Nuts are an important part of my nutrition, especially almonds, Brazils and walnuts. I cannot believe the thing about copper. Just eat nuts in moderation. The same goes for folic acid. You need an all round diet, everything in moderation to keep healthy. I believe in getting my vitamins etc. from food, rather than supplements which have too much in the way of fillers. I eat red kidney beans and lentils as well. I make sure I do take softgel vitamin D supplements. I have been drinking green tea for eleven years and eating bitter almond kernels for the same time.
As for a book, I do not think you can do better than Chris Woollams' Rainbow diet book. Look under Cancer Active (canceractive.com). I think it is a good idea to steer clear of alcohol. It seems to be a risk factor in the development of breast cancer.
Can you remind us which country you are from?
Fond thoughts.
Sylvia xxxx
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Hello Hanieh, Sylvia and all here,
Hanieh, congratulations on becoming a teacher observer, I knew you would succeed; you are very dedicated.
Glad you have been busy and having a lot of positive things going on, your breakfast with your friends sounds like a good time. I think being busy with things you enjoy is so important, doesn't give you time to go to the dark side!
I have some work to do outside this morning, this time of year it is a constant battle with the weeds and vines that are always flourishing. I think if all us humans vanished it would not take long for the greenery to cover everything as if we had never been here! I use my weed-whacker and also have been trying an organic spray; it is made from vinegar, epsom salt and Dawn dishwashing liquid.
Do you have any more trips planned with your family?
Talk to you soon,
Love, Mary
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Hi, MoreShoes,
I like your name, I like shoes and more shoes sounds perfect to me!
So sorry about your mastectomy, I am also sorry I must have missed something. You say this is your third bout with BC, did you have lumpectomy before, or no surgery at all?
I opted to have one breast removed, since they were small there is not much difference. And I was told if I had a recurrence it would probably not be in the other breast. So was it the right decision? I don't know. And I am sad about my missing breast too, and I have sensations of numbness, tingling, achiness in the area at different times. The BC surgeon said it is because of the severed nerves.
Sylvia gave you good advice on diet, I also wouldn't worry too much about the copper in nuts. You will probably not ingest enough nuts to cause any problems at all. I would stick with the unsalted, raw nuts; once you get used to them you will prefer them to the other kinds.
Hope you are feeling well and hope to see you back here soon,
Mary
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Hello Mary,
Thank you for pointing out hat we should be eating raw nuts and not cooked or salted, and certainly not those coated with sugar.
I should have remembered also to say that we should all avoid sugar as much as we can, since we all know that sugar fuels cancer cells.
It is difficult to remember everything when posting.
There was a programme on the television last night, Cancer and Me. Did you happen to see it?
Fond thoughts,
Sylvia xxx.
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Hello everyone,
The thread seems to have gone to sleep. I thought you might be interested in the following articles from the Daily Mail on Tuesday May 31st.
Good health - Why that 'cancer' on a mammogram might not be anything to worry about and other diagnoses that may deserve a second opinion. Headings in this article Doctors are not rocket scientists, 'Risky' clots that may not hurt you, The case against cancer screening, The truth about Depression Pills. All this is well worth looking at.
http://www.dailymail.co.uk/health/article-3616773/...
Hoping to see some posts.
Best wishes
Sylvia
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Hello everyone,
I also found another article. It is by Eleanor Harding and is entitled Why we can finally dream of cancer cure, by top doctor. Consultant hails treatment that can train body to fight disease.
http://www.iol.co.za/lifestyle/its-an-exciting-tim...
Best wishes
Sylvia
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hi Sylvia,thanks for posting links, I will be reading them today.
I wanted to post a couple of pics.
My water lilies are blooming.
I potted 2 tomato plants, they have lots of small tomatoes. In the past I had large garden, now I have just my asparagus bed and these tomatoes. Luckily my brother has a garden and always has too much produce!Mary
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Hello Mary,
Thank you for posting those two lovely photographs. I love tomatoes and asparagus, especially cherry tomatoes.
I have just been reading through the June edition of What Doctors Don't Tell you magazine. There is so much interesting information in it. I shall need to go through it again before posting more details.
It has been another busy week here. The weather is very changeable and the news most depressing.
Fond thoughts,
Sylvia xxx.
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Hi, Sylvia and all,
I read the story from the Daily Mail, a very interesting article. Even though a mammogram 5 months before my diagnosis did not pick up my tumor, (it was later checked and rechecked by different doctors), I still have the test because really it's all we have. I do know women who have had tiny lumps removed with no spread of disease, after they were spotted on mammogram. I have also had a biopsy that turned out to be only a calcification, and was told that my breasts were very dense and it was hard to examine them with confidence in result through mammogram. So like most things in life, certainty is hard to come by and we are left with a choice and I think most of us do go on getting the mammogram because it's part of the whole battle against this cancer.
I find it hard to believe that 1 out of 3 women who are told they have invasive breast cancer had no cancer at all, as the article states. I assume these are women who did not have lumps, but only very small spots showing on a mammogram? The article does not really say, I would have to see more stats somewhere. The author of this article argues that perhaps women under 50 should not get regular mammograms, but only if they have a suspicious lump. However, just from reading on this Discussion Board, it is amazing how many women are only in their 30s, and 40s, and many did find their cancer after a test; I don't think I can agree with his argument.
Interesting about the blood clots in the lung, we now have a reliable way to test for them; but frustratingly, still no good way to do anything about them except blood thinners.
As to the SSRIs, I think they do help some people. I have mixed feelings about them, I know many people that take them, and I cannot claim to be able to say if they actually "need" them. I am only speaking for myself when I say, I don't want to take them because I have tried them and didn't like the way they made me feel. After my husband's death last year, while still recovering from chemo, I was quite down mentally. Several docs offered them quickly, even though I went to them complaining of allover pain and continuing fatigue. I did try one of the brands, and decided I would rather pass my days feeling like myself, for good or ill, without taking the drug. The author of the article mentions a test given to determine the measure of the patient's depression, I was never offered such a test, only the pills. As I said above, I am not a clinician, and only can speak anecdotally about my own experience.
I do like the way the author talks of the "spectrum of certainty", seems a good way to explain the various discoveries of modern medicine.
As for the news, our neverending battle for the Presidential seat goes on and on, until November when almost immediately the next election will be talked about! Next week comes the results of the California Primary; Donald Trump has already (I think) clinched the Republican spot, and Hilary Clinton and Bernie Sanders are vying for the Democratic spot. I definitely do not admire all these people, but I do admire their stamina, they are all nearing 70 or over it, and have been campaigning like crazy for over a year already. I really don't know how they do it. There was a disgusting scene in San Jose, CA Thursday night. When Trump supporters were leaving a rally, they were attacked by a mob against Trump; there were injuries and people were chased down the street, a man had his shirt torn off, and a woman was besieged with bottles and eggs, among many other things. This should be stopped in its' tracks.
I am glad your Brexit election is soon, I hope you get the decision you want; if I were there I would vote the same way you are.
I shall comment on the other article later,
Be well!
Mary
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Hi Sylvia, Mary and all
Thank for all your words of encouragement.
Unfortunately, today I had a slight pain in my lower left neck. Actually it was painful to touch. I went to a GP and he said he felt a mass in my neck. He said it may be infection. He prescribed antibiotics and said if it doesn't become smaller I should have a songraphy of the mass.
I'm again stressed out. Hope nothing serious.
Love
Hanieh
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Hello Mary,
Thank you for your post. It is good to know that you have taken the trouble to go through the links that I posted. It makes everything worthwhile. All we can do is read the information and decide what we want to believe.
I shall post more later when I have got through some mundane chores today.
Fond thoughts.
Sylvia xxxx
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Hello Hanieh,
It was nice to hear from you. Try not to get into a state of worry again. The problem with your neck does sound like enlarged glands (lymph nodes) from an infection. Take your course of antibiotics and see what happens.
Bear in mind that it is not good to take too many antibiotics. Only take them when absolutely necessary. In this country we are getting a lot of publicity about overuse of antibiotics resulting in them becoming ineffective when needed, and resulting in deadly superbugs such as MRSA and C-difficle. This is compounded by the fact that animals, especially cows etc. are being injected with antibiotics and humans are eating the animals. New antibiotics are not being produced and we are heading towards infectious diseases coming back and an inability to control them.
Take care and stop worrying.
Love
Sylvia xxxx
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Hello Mary,
I think that, as far as mammograms are concerned, we each have to make up our own minds. I personally think that they are being overused and we have to remember that each mammogram exposes us to radiation and radiation can cause cancer. The earlier and younger that women are exposed to them, and continue long term, means more and more exposure to radiation. In the UK I remember reading a lot about false positives and positive negatives, so that makes me doubtful about them. The younger you are the denser the breast and so the more difficult it is to ascertain what is going on.
Here in the UK under our NHS you were summoned for a mammogram at age 50. It may be younger now. I did not have any mammograms until I had one at age 63 when I was diagnosed with breast cancer. I did my own monthly breast checks for all those years. My tumour suddenly just seemed to appear from nowhere after I had strained my arm. During my ten years of check ups I had about three mammograms and always worried about having them. I do not intend to have any more now. It would not be at the hospital that I could have them, but at the mobile units that travel the country. I do not wish to do this.
As we know from Chris Woollams there is a lot of controversy about mammograms.
I am very suspicious of any kind of anti-depressive pills. I think they turn people into zombies and that they become addicted to them. They are also associated with dementia.
Changing the subject, I do wonder how the Presidential Election will end in the US. Did you know that Donald Trump is coming to the UK the day before our referendum?
The so-called People's Referendum has been hijacked by the politicians and is probably more vicious than a General Election. It is definitely the Establishment against ordinary people. I am disgusted with the Labour Party, which is supposed to stand for democracy and social justice, to be hand in glove with the Remain side in all of this. I think the Labour leader, Jeremy Corbyn, is for Brexit but he has had to abide by Labour policy adopted before he was elected leader by a huge majority. I think he should at least have given Labour MPs the right to freedom of conscience. He gave it over the bombing of Syria, which he was firmly against.
The referendum coverage has been over the top and I shall be glad when it ends. The Establishment is using the same tactics as it did for the Scottish Independence Referendum. They are saying that Brexit is slightly ahead. They said the Yes for Scottish independence was slightly ahead in order to frighten people and get the No side out to vote.
That is about all for now.
Thinking of you.
Sylvia xxxx
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Sylvia,
When I went to read the other article you had linked to, I got a webpage that said the article was unavailable. The first time I scanned it, I remember it was about the immunotherapy treatments, and apparently this is the way that the new cancer treatments are heading. Sorry I cannot go into it at any more depth, perhaps it will become available again later.
Talk to you soon!
Mary
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Hello Mary
The most interesting article I have read recently was one in the Daily Mail yesterday, by journalist Quentin Letts about how what is going on now about the EU is very much like what went on at the Battle of Hastings in 1066, when King Harold was defeated by the Norman William and became known as William the Conqueror. It is highly readable and traces the hardships of the Anglo-Saxons under France. It traces our history up to the present day and how once more Europe is having a bash at us and destroying our island independence.
Battle for the very soul of Britain: The debate has all been about economics and borders. But for the Mail's incomparable QUENTIN LETTS it should be about saving the identity of a country he loves:
http://www.dailymail.co.uk/news/article-3624730/QU...
Tell me what you think.
By the way, I have no devotion to any particular newspaper. I have a look at newspapers and am usually looking for news about cancer. On Saturday June 4th cancer was on the front page of the Daily Mail with an article entitled The Cancer Revolution - Personalised treatment that is 'six times better' at beating the disease from Sophie Borland, Health Editor in Chicago.
http://www.dailymail.co.uk/news/article-3624700/Th...
There is also a second article by her in the same paper entitled Found, the key to stopping breast cancer returning.
http://www.dailymail.co.uk/health/article-3624746/...
Best wishes
Sylvia xxxx
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Hello Mary,
I am sorry you could not get the second article. Funny things happen on the internet.
I have just posted two other links about targeted treatments to do with individual DNA. It was front page news yesterday.
Let me know what you think. I sometimes think it is all just looking for more drugs and money.
The genetic test here costs £2,000 an individual, so I do not suppose they will be available on the NHS and new drugs will be too expensive as well and NICE will probably not approve them.
Best wishes
Sylvia xxxx
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Hi Sylvia, thank you very much for your tips. You're right that I shouldn't read everything on the net, they change their mind continuoulsy and keep on finding new superfoods :-)
I live in the Netherlands. My alcohol consumption is one glass in the weekend. I think I'll keep that in. A friend told me to start with wheat and barley grass in the morning. I found it weird, but it does give me a lot of energy. Do I think that a healthy eating regime will keep cancer away? Probably not, but at least I'll feel better in the meantime.
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Hanieh, we can also have "normal" things, like infections. I sure hope it's something like that.
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Hi, Hanieh,
I hope the pain in your neck is getting better: I have been going to a masseuse who works on tension points in my body. She has found knots and pains in my feet, calves, back, shoulders, and even the back of my head! I did not know one could get knots everywhere in the body!. I hope yours is not anything wrong, and goes away soon.
This is something just a little funny. For many years I had a habit of saying, "Oh, that's a pain in the neck!", and "Oh, that's a pain in my behind!" Someone told me not to say those things because it could actually cause them to happen! Now I don't know if that's true, perhaps it is if our thoughts and words can become actualities.
I hope all will soon be well, and your mind is at ease.
Talk to you soon, Mary
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Hi, Sylvia,
I thoroughly enjoyed the article by Quentin Letts, laughed out loud a couple of times, and learned some history along the way. Of course we learned about William the Conqueror in elementary school but it had been a while since reminded of him and of how long ago the Battle of Hastings happened.
I was cheering Mr. Letts' emotionalism on the subject of "Leave" or "Remain" because I feel the same sort of emotion about my own country. And I feel it for your country; I think for a large part because since childhood many of my favorite fictional characters are English: Sherlock Holmes, the DeWinters of Manderley, Miss Marple, King Arthur, Catherine Earnshaw and Jane Eyre, the Pevensie children who find Narnia, and on and on. Not to mention the heroics and foibles of your Royal Family, I know they are a drain on the Treasury but they are a fascinating symbol of England, never mind their German origin.
I believe in strengthening borders in our own country, and applaud the right of any sovereign nation to fight to keep their language and traditions alive. It seems, as Mr. Letts states in the article, that nowadays everything is very nuts-and-bolts and comes down to whether or not a few more shekels will pass into the hands of politicians, who will then perhaps allow a pittance to go to the populace. (Wow, that was accidentally an alliterative sentence!)
I think the passion for one's nation's identity is what has fueled the rise of Donald Trump over here, we shall see how all that plays out. England's decision comes soon.
I read the articles on cancer: reading the genetic code of tumors sounds very interesting. If it could save patients from unnecessary radiation and chemotherapy I would be all for it. I see there is a study of breast cancer patients starting soon, with results coming in 2020.
The other article is mostly about the HER2+ tumors of breast cancer, and new ways of administering the drugs to treat it. I know that right now these patients often go through a year of chemotherapy, it would be wonderful if they could get good results by lessening the amount of drugs given. There also seems to be a small betterment in the treatment of pancreatic cancer, one of the most deadly types. They are able to sometimes keep patients alive longer while trying to treat the cancer surgically. They do not mention quality-of-life here.
I had better get some things done now,
Talk to you soon, love, Mary
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Hello Mary,
I was so glad to know you enjoyed the Quentin Letts article. I somehow thought you would. Those Normans were really awful to those poor old Anglo Saxons. This may have been nothing compared to what this country may be in for if we stay in the EU. We are way over-populated for an island our size, especially England where the population is 60 million plus. Scotland, Wales and Northern Ireland have about 10 million between them. Scotland has a lot of space.
I share the same love as you for all the characters in our English literature. I also love American literature, especially people like Edgar Alan Poe.
I am sorry to interrupt this post, but I have just had a phone call and I have to go out. Talk to you later.
Best wishes
Sylvia xxxx
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Hi Sylvia
My neighbour has his house for sale and the people who were viewing tonight knocked my door and asked about the charity. The lady is currently being treated being treated for TNBC. I told her about this group so hopefully she will join. She has had three FEC and treatment four was doxetaxol but she had a very bad reaction and they had to stop. Currently she is on treatment four of twenty radiotherapy.
I filled them in on all that I know, which seemed quite alot. I surprised myself. First bit of good the charity has done 😀
Michael
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