Calling all triple negative breast cancer patients in the UK
Comments
-
Hello viewfinder,
I do hope that your sister will make good progress.
Please remember that your sister should be in charge of her treatment and that if she would prefer a mastectomy then she should tell the consultant that is what she wants.
As for autosave, I mentioned that to the Moderators years ago. Now I write in Word (other programmes are available) saving as I go. I then copy and paste into the thread when I am done.
As for obesity it is a real problem in today's Western world.
Wishing you all the best.
Love.
Sylvia xxxx
0 -
Prevention is important but we need treatment for those for whom prevention is too late.
Susie
0 -
Sylvia,
I've sent several suggestions to the mods. All they reply is that they "are passing along these suggestions to our tech team." My guess is that they can't make changes because there are massive numbers of posts and can't easily make changes behind the scenes.
I, too, write my replies before I post and paste them into to reply field. I use Notepad.
0 -
Sylvia,
I agree that my sister should be in charge of her treatment and that if she would prefer a mastectomy then she should tell the consultant. Just hope she is given all realistic options that would enable her to make the best decision. It is my understanding that TN can be a very aggressive cancer, and the results of her genetic test shows that she is further vulnerable including ovarian cancer.
She will be having a third surgery in the same breast sometime after he last chemo shot (#4) on April 26th, then followed by radiation treatment. This is good news:
According to an article at this site, Lumpectomy for Early-Stage Triple-Negative Disease Doesn't Seem to Increase Risk of Breast Cancer Coming Back in Same Breast:
"Many women and their doctors may automatically choose mastectomy for triple-negative disease because this type of breast cancer is more aggressive. It's reassuring to know that women who may prefer to have lumpectomy can make that choice without increasing the risk of local recurrence."
0 -
Hello viewfinder,
Thank you for your interesting post. It is always good to hear from you.
I think that it is a good idea when faced with breast cancer to try to get to NED with the minimum treatment possible.
I do wish you and your sister all the very best.
The thread has been very quiet all weekend.
Love Sylvia xxxx
0 -
Hello Mary,
I was just wondering how you are getting on and to say I hope you are making progress after your surgery. It must be difficult typing with your left hand.
I had a read of the latest Chris Woollams newsletter and picked up on a few things but I think I have read about them before. I was interested in reading, once again, about saturated fat and increased cancer risk. It does make you wonder what to believe. He mentions the growing trend in America by "Health Experts" who advocate high fat diets as a way of being healthier and beating chronic illness. He says that for cancer this is simple not supported by research evidence.
I tend to follow my own common sense and tend to keep away from meat, poultry and dairy foods where you will get most of the saturated fats, but make sure I have fat from oily fish, nuts and avocados and make sure I have this kind of fat when taking vitamin D as you need fat to absorb it.
He is also talking about the gut again and how you need an acid gut and alkaline body.
He further mentions all the health benefits of ginger. I use root ginger all the time and like to add pieces of it to ginger tea.
That is all for now. I am trying to push March forward to get into Springtime.
Thinking of you.
Love.
Sylvia xxxx
0 -
Hello Gill,
I do hope you are making progress. When you feel able please let us know how you are getting on.
Love.
Sylvia xxxx
0 -
Sylvia
https://www.washingtonexaminer.com/opinion/parliament-goes-chicken-on-brexit
i havent been keeping up with politics in general, i found this article on a site i like and it seems to explain things simply. do you agree with this man's view?
i think i have to be in top shape to keep up with politics, i'm finding light-hearted entertainment preferable for now.
it is tiring to write much with left hand. i am surprised at all the the things i can do with only my left hand, necessity is mother to invention i suppose.
wednesday i shall have stitches out and see what's next.
Like you i hope Gill is improving, she was seriously ill, perhaps we shall hear something soon.
i linked to the above, but caution that anyone doing chemo should clear with doctor before trying anything like this. i also liked Chris's post on 25 epigenetic compounds to correct cancer, all foods and supplements.
closing for now, best wishes to all, later
Mary
0 -
Thinking of Mary and Gill and also hope you are making continued progress!
Susie, that cancer may be a constellation of 11 diseases is interesting. I agree with Sylvia, that it may be just another way to make money on drugs but time will tell. The way the body works is certainly mysterious.
Sylvia, the statement by your Prime Minister "that the drug situation was not in her hands" sounds flippant and ignorant to me, but maybe I misunderstand.
You should get a large group of women together, go to right to the PM office, and let her hear from cancer patients. I'd first contact the MP who mentioned TN for help about the best way to make this an issue to bring it to the attention of the PM, government officials and the general public. If it was well organized, I'd get the media involved. Her glib comment in response to a real problem for cancer patients in your country should be front page news. I did that a number of times before I was in public office. I would never respond to a constituent in that manner! But that's just me. (I'll take a trip to the UK to help organize...only kidding).
I haven't been following Brexit like I used to. My daughter slammed her finger in the car, went to an urgent care clinic and got six stitches (nothing broken, thank goodness). Needless to say, I'm been helping extra with the children who had the week off for spring break.
The article I found and posted the other day makes me feel more at peace about my sister's decision to have a lumpectomy.
0 -
The Times reports this morning that the percentage of women dying with breast cancer in this country has fallen sharply. We were starting from a low base, with one of the lowest survival rates in Europe, but we've now caught up and are up there with the EU average.
Of course, this could so easily reverse with all the problems facing the NHS, notably a shortage of staff with the Brexit nonsense.
Keep watching the skies!
Susie x
0 -
Hello Mary,
Thank you for your latest post. I shall have a look at the link you posted and let you know whether I agree with the man's view.
I have been following Brexit very closely since the referendum on June 23rd 2016 and have never really felt that Parliament would deliver on it. They have just dithered and dithered. There are 650 MPs and 500 of them are Remainers, so you can see the problem about getting any objectivity. I think what we need now is a General Election.
I can understand that you need light-hearted entertainment with all that you are going through. I feel like that as well but I cannot find anything truly funny on our television programmes. One series I did enjoy was Clunk on Britain, but that came to an end.
I can understand the problem with writing with your left hand. Because of the lymphoedema recurrence that I had in October 2017, but quickly passed, I do try to be careful with the lymphoedema right arm. I am left handed for writing and using a knife and fork but right handed for other things. I have been regularly vacuuming with my left arm and this has caused intermittent pain in the elbow!
I shall be thinking of you on Wednesday when you have your stitches out.
I do hope that we shall hear from Gill in the near future.
Thank you for the other link that I shall have a look at later today.
Cancer seems to be in the news this morning on Radio 4 8 am news. I looked online and found an article from the Daily Mail and it starts as follows: "A desperate shortage of clinical oncologists in the NHS is likely to have a detrimental impact on cancer patients, a report has warned."
It further says that there is a growing staffing problem and that by 2023 the workforce will be at least 22% short of cancer consultants.
The link is https://www.dailymail.co.uk/wires/pa/article-6824367/Cancer-patients-suffer-lack-consultants.html
Breast cancer was on the same news at 8 am. The news was that there has been a 13% reduction in breast cancer deaths in the latest statistics. This is being attributed to mammograms and earlier diagnosis. I am trying to find out more information. We need to know how many deaths there are now.
I am still trying to find the time to read the section from Chris Woollams newsletter entitled Bioactive foods stop cancer stem cells regrowing. I see that the particular article I printed out following the guide to more details is dated August 27 2016.
We are back to not too many posts.
Take care, Mary.
Love.
Sylvia xxxx
0 -
Hello viewfinder,
Thank you for your latest post.
The response that the Prime Minister gave at Prime Minister's Questions was really the only one she could give. She does not decide what cancer drugs will be made available and those that will not be available on the NHS. We have a body called NICE (The National Institute of Clinical Excellence) that decide what drugs will be allowed on the NHS. They have guidelines about treatment.
The statement by the MP was very brief, so I have no idea what the drug in question is. Under the NHS there will always be rationing even if it not called that. The NHS is in dire straits anyway. When it was introduced in 1948 it was a simple basic system based on treatment being free at the point of need, but it is certainly not free. At the moment I think it is overwhelmed by the number of patients and the lack of staff and funding. This country is overpopulated and there is waste and abuse on both sides.
I was interested to know that you have been in public office. What did you do?
I was sorry to read about your daughter and I do hope she will heal quickly.
I was glad to read that you feel more at peace about your sister's decision to have a lumpectomy, although I still find it unusual to have three lumpectomies, but I realise we are talking about two different countries and two different health systems.
That is all for now.
Love and greetings from the country of the absurd!
Sylvia xxxx
0 -
Hello Mary,
I have just managed to sit down and read the article about Brexit entitled Parliament goes chicken on Brexit by Dan Hannon, March 15th 2019.
I thought this article says it exactly as it is. We are not going to exit on March 29th as we should legally be doing. The people of this country have been had. I found the article quite entertaining even though what is happening in the UK is tragic. There was never any intent from the Conservative Government to honour the result of the referendum and it goes the same for Labour. Both parties pledged and put it in their manifesto at the last election that they would honour the result of the referendum. Parliament, it seems to me, is in contempt of the people. I did laugh at the reference to 1775 when the American settlers were going for their independence.
On another matter, I have also read the article in Cancer Active about bioactive foods. It is very interesting. I do wonder how many other people in this group are reading any of this information. We do not get any feedback.
The main points are the following:
Some foods help cancer stem cells re-grow, while others stop them.
Consume more foods with bioactive ingredients because they can stop cancer stem cells regrowing.
Cancer stem cells are at the heart of cancer.
No drugs currently kill cancer stem cells (while cancer drugs can knock tumours back 40 to 70%, no drug exists today that can completely wipe out the 3% of cells, the cancer stem cells that lie at the heart of cancer).
Bioactive compounds stop tumour growth.
A bad diet can make the tumour re-grow but a good diet containing compound can stop this.
What bioactive compounds and supplements can stop tumour re-growth? Top of the list, for Dr Young S. Kim, head of nutrition and cancer at the National cancer Institute, are the following:
Sulforaphanes, curcumin, piperine, theanine, choline, plus vitamins A and D, genistein and EGCG.
I have read of some of these before and know that sulforaphanes are in broccoli, that piperine is in black pepper, curcumin is in turmeric and EGCG is in green tea.
I think we are so lucky to be able to get access to all this information.
We know how important a healthy diet is in trying to prevent cancer and it is the one thing that we can control.
I also read that article about ten ways to improve chemotherapy and think that it is useful for those facing chemotherapy to read it.
That is about all for now. It is a calm dry day here and much welcome after days of wet, windy weather.
Take care.
Love.
Sylvia xxxx
0 -
Sylvia,
I hope I don't bore you answering your question.
I was a school board member for twelve years in Palm Beach County FL, 14th largest school district in the nation at the time. We had 124 schools, over 5000 employees and about 125,000 students.. We had a $1 billion budget, more than the County Commission. PBC has the largest land mass east of the Mississippi (when I ran it was county-wide elections but they eventually changed it to single-member districts).
I came to be known for my stand against a technique called Values Clarification, which is ethical relativism in disguise. CS Lewis (my favorite...favourite...author) wrote about it in his book, "The Abolition of Man," though he didn't use the term Values Clarification.
I also fought a book called "Let's Talk About Health," full of relativism and gave way too much information to kids about drugs. The book was used in seventh grade.
I asked the Superintendent of Schools to reconsider the book. He set up a committee and, of course, they voted to keep the book in the schools. When parents ask for a book to be removed the educrats call it "censorship." When they do it, the educrats call it "selection."
I got so mad that I gathered a large group of people to form our own committee and we voted that the book be removed (it wasn't, of course). We held our meeting in the parking lot of the school district headquarters...and our meeting made headlines in major newspapers.
As the Sun-Sentinel wrote at the time, "(my name) turned a crusade against Let's Talk About Health into a successful campaign for the school board last year. She said she doesn't mind her children discussing controversial issues, but they should be related to real- life situations."
So I decided to run for School Board. The Palm Beach Post opined that I was a "dangerous woman" and told people not to vote for me. But I won anyway. (My second election, the Post recommended me, I guess after watching me in action for four years).
I'm a very conservative person (I take three right turns to go left) and Palm Beach County was extremely liberal. It is probably still that way. I moved from there more than 15 years ago so I really don't keep up. I was quite controversial and received a lot of media coverage during my tenure.
Anyway, it was a varied and interesting experience. I hope, in some small way, that I helped improve the education of children attending public schools.
BTW, my campaign slogan was "Put the Public Back in Public Education," something that still needs to be done.
0 -
Hello viewfinder,
I have just read the article about lumpectomy for early stage triple negative breast cancer for which you sent the link. I did find it very interesting to read especially the different details about the 1,851 women on which research was based.
I think that when we are going through breast cancer we have to make our own decisions about our treatment and have no regrets.
I have just read your other post about your work on a public school board. I found everything you had to say most interesting and I do agree with what you did. It must have been a lot of work. I do love the word 'educrat' that you used and I agree with your sentence at the end of your post about putting the word Public back into the school system.
In this country our state education system has been messed up over many years and I do not know how it is going to be sorted out. We have a very deep class system and it will not change under a monarchy. We need to get rid of private schools here and then more effort will be put into the state system. I do not think our children are getting a good education. There seems to be too much emphasis on political correctness and gender reassignment rather than teaching children to read and write.
Thank you for your input into our thread.
Love.
Sylvia xxxx
0 -
Sylvia,
I read the article "Parliament goes chicken on Brexit," and found it very interesting. Though I don't understand the structure of your government it certainly seems as messed up as ours.
Don't fully understand what you mean when you write: "We have a very deep class system." It's interesting that you think you need to get rid of private schools. From my perspective, I think we need more charter and affordable private schools in our country. And I believe in school vouchers. I was a strong supporter of home schooling at a time when home schoolers were afraid to let the public school bureaucracy know about their existence for fear that it would impose public school's curriculum on them, or even permit them to exist.
I think the public school system in the US needs more competition. When I was on the Board, the school district was under federal order to integrate our schools. A few of us had to meet with the Department of Education in DC. The gal's desk was piled HIGh with paperwork. I knew from talking with her that she hadn't the foggiest idea about our school district. I'll never forget when the cab driver dropped us off at the Dept. of Ed. that he said "this is a scary place." That says it all.
I never heard of "bioactive foods." It's time for some research.
0 -
Hello Sylvia,
I don't believe that monarchies cause inequality. The US has higher levels of inequality than the UK, whereas monarchies such as Sweden and Denmark are among the most equal societies in the world.
Susie
0 -
Hello viewfinder,
Thank you for your latest post.
I think it is probable that the reason we both see our governments as messed up is that when they get into power they live in a bubble and are far removed from the everyday struggles of ordinary people.
As for education, I think the main problem is that they are starved of funds.
Let us know what you come up with when you research bioactive foods. When it comes to anything to do with nutrition I think that you cannot go far wrong with the Mediterranean/Rainbow diet. You need a mixture of foods and moderation in everything.
The bioactive compounds mentioned in Chris Woollams (Cancer Active) are a mixture of some well known ones and less well known ones. I would think all of us on this thread would know about curcumin and that it is found in turmeric. As for sulforaphanes I remember reading that broccoli is a good source, but we all know the importance of cruciferous vegetables in an anti-cancer diet. Piperine is an alkaloid and is found in pepper. Choline is used in the synthesis of lecithin and in preventing accumulation of fat in the liver. Theanine is something I do not know much about.
Genistein is a plant oestrogen found in soya and thought to be effective in fighting cancer.
EGCG is found in green tea. I do know this and I have been drinking a lot of green tea every day for the past nearly fourteen years. I learnt about its benefits when I was first diagnosed with breast cancer.
As for the rest, we should all know the importance of vitamins A & D.
I have been trying to find the time this week to compose a list of relevant foods.
The other night I listened to a programme on BBC Radio 4 entitled Inside Health. I have always found it interesting and this week it was all about 'prehabilitation' and how they have been researching getting patients on healthy food and getting them physically active before surgery. It appears to work better than doing rehabilitation after surgery. I am going to have a more thorough look at this on the website, again when I can find the time! It makes sense to me.
That is all for now.
Love.
Sylvia xxxx
0 -
hi everyone
Hope everyone is doing well. It’s getting cooler here but still a while before it gets cold! I’ve been very busy. I know have another grandson and I’ve been to Adelaide quite a bit to visit my 3 boys! They are a joy! Uni has also been really busy and I’ve managed a distinction for my last 3 units. The research unit I’m doing now though is very hard and I doubt I’ll be able to keep it up! Ha ha
I’ve been taking one day at a time and they seem to be going very quickly! Still suffer quite a bit with joint and back stiffness but I’m Try not to think too much about that! Takes me to that dark place and terrifies me. I am very stiff in the morning but when I start moving I’m ok
Stay well everyone
Cheers
Ksth
0 -
Hello all
I am feeling fine after having flu and congested chest. Here today we celebrate HOLI that is festival of colour. We throw colour on each other and wish each other and spend the day eating and dancing with friends and relatives. I wish you all happy Holi and may God paint the canvas of your life with beautiful colour s and sprinkle health and happiness.
0 -
Jags,
Happy Holi to you!
Last year I had the honor of taking photos at the area Holi festival. Unfortunately it rained all day so it wasn't the best weather to take photos but that didn't stop anyone from having a wonderful time. Here is a collage of a few photos I took at the festival.
This is one of my favorite photos because it's so colorful and abstract.
0 -
Sylvia,
I've done a little research thus far on bioactive foods. To tell you the truth, I haven't understood much of what I've read. None included a list of bioactive foods, just a few examples. I'll do more research as time permits. Though at my age (almost 75) and stage in life, I'm not sure changing diet would be much of a benefit.
0 -
Hello Kath,
It was nice to hear from you and to catch up on your news.
Congratulations on the birth of your new grandson.
Congratulations also on doing so well in your latest exams. We are all proud of you nd very happy that you have done so well. Keep up the good work.
You are wise to be taking one day at a time. I am sure a lot of us here do the same.
If you can get it where you are there is a product called BIOFREEZE Pain relieving gel that is effective. It says on the tube that it gives effective long lasting pain relief from arthritis, sore muscles and joints and back pain.
Another good product for aches and pains is Arnicare arnica cooling gel.
Today is the first day of Spring here and I am so glad to say goodbye to autumn and winter! Yesterday apparently was International Happiness Day. I had never before heard of this.
That is all for now. Keep in touch.
Love.
Sylvia xxxx
0 -
Hello Jags,
It was good to hear from you. I was glad to know that you are feeling fine after flu and congestive chest.
Happy HOLI to you. It sounds like a day full of fun and nice colours can always lift our mood.
Thank you for your best wishes.
Love.
Sylvia xxxx
0 -
Hello viewfinder,
Thank you for those lovely photographs.
I have found a lot of information about bioactive compounds and have some lists of foods that contain them. I shall try to post them later today.
Remember it is never too late to add nutritious food to our diet. In fact, it is probably even more important since we are told our immune system does not work as well.
I am 76 and make healthy eating part of my everyday life.
Yesterday, March 20th, marked 13 years and 9 months since diagnosis. I do not know where the years have gone.
Take care.
Love.
Sylvia xxxx
0 -
Hi Sylvia
i'm glad you thought the article on brexit made sense, i did too. i like Daniel Hannan, he is British and either is, or was, a member of Parliament and has a good way of explaining things.
i also liked the post by Chris on the bioactive foods, these are things we know, but I need reminding sometime. i had dental appointment Wednesday and orthopedic doc yesterday, both days needed driver so I took them to lunch in appreciation. i enjoy going out for the socialization and experience of different surroundings, but so often find the food disappointing. Usually the food does not seem very bioactive, to say the least! although i had a decent salad yesterday.
the dental visit: i have a cavity! it has been many, many years since i had a cavity so i looked it up. apparently in our 60s we enter another phase of life where we are more prone to cavities. who knew? i will get it filled Monday ugh.
Orthopedic: i had stitches out, and was told to wear pillow sling another 2 weeks. 4 more weeks of passive exercise, then will begin active exercise, then strengthening. that will go on for 2 or 3 months. i was relieved to hrar i hadnt screwed things up, every day i thought i had done something wrong.
Sounds like a long treatment but i see light at end of tunnel. i have a little more freedom with sling, i can remove it while relaxing but back on for moving about and sleep.
will close for now, love
Mary
0 -
Sylvia, It's wonderful to hear that it has been 13 years and 9 months since your diagnosis!
Even though I'm not personally triple negative and visited here because my sister is, I've come to really enjoy this thread. I am amazed at the wealth of information participants share.
Sylvia, you deserve special accolades for your dedication to this thread, for starting it about nine years ago, and for keeping it going for so long. Thank you!
0 -
Hello Viewfinder
The photographs are really wonderful and express a lot about the colourful festival Holi.
Thankyou
0 -
Just diagnosed with triple neg, stage 0 DCIS - so far - from a biopsy. Terrified, but hopeful. My MRI was yesterday, and I did get DNA blood tests done. 3 weeks the results of that should be in and I'll have an appointment with the Dr to decide on treatment. Last year they found a small round particle that they were not worried about, but required 6 month mammogram follow up. In September, everything was the same. Thank God that they wanted to do one more 6 month follow up before it went back to one year. So this time they found that the original speck had not changed, but found this DCIS that had not been there 6 months ago. That is what is scary. It's obviously pretty aggressive if it wasn't there 6 months ago and now it is.
The pathology report mentions "high grade" which is also scary. I'm adopted is why they are doing the DNA testing.
I've read some of the thread here, not all, and plan to use these 3 weeks to exercise, start taking vitamin D and eating even better than I have been over the last year. I'm currently Type II diabetic, and last year decided I didn't want to be on expensive meds (Januvia) anymore. So I started a ketogenic eating plan. This has allowed me to shed 20 lbs, and has stabilized my blood sugars. I went from an A1C of 11 to 7, to 5.9. I am 60 years young.
I guess I'm most terrified of the chemo effects, being there is no telling what I've put my body through already being diabetic. I go to the internist regularly, and I've never had bad blood tests for kidney or liver function. My chest xray came back clear.
These posts have helped, because yes, I stupidly googled TNBC and the first thing I saw was "aggressive" and that I'd die in 5 years!!
Mary, aka Stitch
0 -
hi viewfinder
Thanks for sharing your views and some life experiences. also the Holi pics, i was completely unfamiliar with that.
our dept. of ed. was started in 1979. now it is another huge bureaucracy. Somehow people got educated before that date, right? I read somewhere that there are so many government agencies in so many buildings that nobody really knows how many there are. So much waste.
Our very small Post Office was flying a very tattered flag a few weeks ago, I commented on it. She had asked her Boss Postmaster for a new one, and the request was slowly making its' way up the bureaucratic ladder. in the meantime, a veteran came by, saw the old one, was appalled and immediately went and got a new one. And hung it up. Just a small anecdote.
Hope your sis is doing okay, you are certainly are a good sis to her. and I admire your photography skills.
Later, love Mary
0
