Calling all triple negative breast cancer patients in the UK
Comments
-
Hello linali (Lindsay),
I was so pleased to read your post and I really appreciate your posting from conference. I can imagine how interesting that speech from a Colombian trade unionist must have been. What a struggle people have for their rights.
I was glad to know your conference was supporting the people of Greece. I am waiting to see whether they leave the EU. I wish we could have our referendum sooner rather than later.
It sounds a though you are having a truly interesting time. Please remind me what ETCU stands for.
All is quiet here. The other day I found a letter in my post box. It had been hand delivered and was from Hospiscare in Exmouth. They are having a big fund raising day in the centre square in Exmouth on Saturday. They had raffle tickets for me to sell. Raymond and I bought them and I took them down to their offices which is a house they bought from funds raised. I think I am going through Proustian experiences at the moment. As I walked in my mind went back to ten years ago when I went there as a patient. One of the ladies who took care of me came out and we chatted a bit. She told me I looked so very well. I shall try to go down to support their day but I cannot do too much as I have other responsibilities and commitments.
Please keep in touch. It is so important to try to keep up with information and you with your centre are so very helpful.
Fond thoughts.
Sylvia xxxx
0 -
Hello everyone,
I thought I would post some more pictures of our grounds as various plants come into bloom.
The thread is still getting in lots of views but only a few posts. It seems as though our recent group of people have finished their treatment and moved on. Amanda has probably finished her radiotherapy now, which means there will be no one going through treatment.
We have not heard from our regulars for a while now, so I am assuming they have left. It is good news, in a way, that no new patients have come forward, so let us hope that fewer patients are being diagnosed with TNBC and that if they are they are well informed and able to cope.
The latest issue of Vita, a free magazine from Breast Cancer Care, has just come out and is full of useful information. It is an inspiring magazine with lots of stories of patients that are encouraging and inspiring to all cancer patients. It shows you that there is life after cancer and that you can do great things. It is well worth getting. There is good information about lymphoedema which is often a common side effect of breast cancer treatment, especially after surgery.
Sending best wishes to everyone.
Sylvia
Red bottle brush (callistemon) coming into bloom.
Hebe
Winter hardy fuchsia
Winter hardy fuchsia
Hebe
I made this flower bed after some shrubs were killed off after a winter freeze.
Hydreanga
Peace rose
0 -
Hello Hanieh,
I know you have been feeling down lately. I think you would benefit from reading Vita Magazine or if you cannot get it have a look at www.breastcancercare.org.
Thinking of you and sending best wishes.
Sylvia xxxx
0 -
Hello adagio, Tom,maryna8, marymargarethope,Jackpot (Gill), suewirral and Amanda10.
We have not heard from you for a while. Please let us know that you are fine and that you have decided to move on.
Best wishes, Sylvia.
0 -
hi! Thought I'd post! I'm not from uk but from Malta! I'm going through treatment! Have 2 Taxotere left and have just got through 13 days of temperature! Nothing wow 99.5 but still ended up in hospital on iv antibiotics etc for 4 days and one of the worst things I have is phlebitis! One arm bad and I think it's happening to the other arm with all the antibiotics or from where the nurse too bloods..... Omg which means I won't have an arm left! They have planned a lumpectomy and radiation.....its a hard slog
0 -
hi Sylvia / everyone
Hope everyone is ok and enjoying the sunshine.
I had my last radiotherapy today. I had 15 in total . It wasn't too bad I'm a little red and a bit sore nothing compared to chemotherapy. I've been told to carry on with simple shower gel and aqueous cream for a few weeks. I see the oncologist next week then an appointment in three months time. Then I've been told it will be 12 monthly checks which I will question as I don't feel this is adequate .
Your grounds are lovely Sylvia I bet it keeps you very busy, fit as well.
wishing you all a lovely weekend .
Amanda
0 -
Hi Sylvia
Matthew works as a researcher for a labour MP, I am not sure which one. He is also a councillor in Lambeth and is the labour whip. Daisy wants to be a chef. Personally it sounds too much like hard work to me and I couldn't stand someone like Gordon Ramsey bawling at me. Alex is working away at the Camphill community and starts in the School next month which means regular 9-4 Monday to Friday, so no more shift work.
I am puzzled with what is going on with Greece, the media is making look as though they have capitulated. I hope not.
Weather is a bit awful here but on a personal basis I hope it pours down on Monday when all the parades take place. We have a new chief constable here, who's background is from the old RUC, and I am afraid he is allowing things to get out of hand.
Michael
0 -
Hi Sylvia and everyone
Sylvia your pictures of those lovely flowers really rejuvenated me and I can't express what pleasure they gave me at the end of a busy day. Also thanks a lot for the link that you sent. Right now I m waiting for the reply.
Yesterday was my birthday and because of that I spent two days with my maternal aunts and cousins in the absence of any men to have some fun. Of course none of them knows anything about my illness but were amused by my strange short hair as I always used to have long hair. We enjoyed being together a lot after a long time as I had avoided visiting them during my treatment and we did lots of dancing and playing. So I managed to lift myself from that state of feeling low.
Sylvia I love you for all your kindness and support and I'm really happy to see no new patient has come to this thread. I hope everyday less and less people get affected by this disease.
At the same time I would love to strengthen our bond here and to share our efforts movings beyond cancer altogether. I will also try to be the one who informs all the friends here how I try to move on. We can all be our each other 's inspirations.
Lots of love
Hanieh
0 -
Hello Jrip,
First of all I would like to give you a warm welcome to our group. Although I started this thread nearly five years ago to bring triple negative breast cancer out of the darkness in the UK, I have always said that anyone anywhere is welcome to join us, and we have had women from all parts of the UK but also from the US, Canada, Australia, South Africa, Germany, Iran, Ireland and indeed Malta. We had someone from Malta (MariaMalta) for a long time and she went through all of her treatment with us, but we have not heard from her in a while. Many women do decide to move on when their treatment has finished.
I was sorry to read that you have been having a tough time on the taxane drug, docetaxel (Taxotere), but you will soon be finished with just two more sessions of Taxotere to go. A lot of women do seem to suffer on Taxotere and do indeed end up in hospital. You got through it and are now safely back home and near the end of your journey.
I was sorry to hear that you had developed phlebitis in addition to everything else you were going trough. It could well be from the nurse taking blood from veins or from introducing chemotherapy drugs etc. through the veins. Did you have a cannula or a port for the chemotherapy? Some think that a port is better and easier on the veins. I had a cannula and was fine but it can become difficult to find a vein. Have you spoken to your oncologist about this?
What other chemotherapy drugs have you had? The most common ones are epirubicin and cyclophosphamide, commonly abbreviated to EC.
I was interested to know that you are having your chemotherapy before surgery. This is usually done when the tumour is large. I had chemotherapy before surgery and had epirubicin. Cyclophosphamide for the first three months and then docetaxel (Taxotere) for the last three months.
In Malta have you been told what kind of breast cancer you have, what stage, what grade, the size of the tumour and whether lymph nodes are affected.
I think all of us on the thread will agree that chemotherapy is a hard slog, as you say, and is the most difficult part of the cancer treatment, but we do get through it. Make sure you drink plenty of water, get plenty of rest and keep looking forward.
Are you working while going through treatment?
We have some very nice women on the thread and they will all tell you that you can get through this. We also have two very nice men.
Tell us a little bit about yourself, your interests, your likes and dislikes etc.
We are here for you and please do not hesitate if you have problems.
Wishing you all the best.
Fond thoughts.
Sylvia xxxx
0 -
Hello Amanda,
Congratulations on having finished your radiotherapy. I also had fifteen in total so I know how wearing it can be going to the hospital every day. Take very good care of your skin as it will be very sensitive.
Let us know how you get on with your oncologist next week. From my own experience the visit to the oncologist is standard practice soon after you finish your treatment. Waiting three months is also what I experienced and going every three months for a couple of years should be standard practice. I was surprised to read that after your first three months appointment you will not have another one for twelve months. That seems a long time. I had appointments every three months alternating between the oncologist and the breast cancer consultant for at least two years. After that for quite a few years I went every six months, again alternating. After that I went for more years, once a year with the oncologist. As you know I had check ups for ten years after diagnosis and for seven of them I saw the oncologist and the breast cancer surgeon. After about seven years I was discharged from the breast cancer consultant and continued with just the oncologist. All my check ups were just physical ones and I had mammograms every three years. I had no other scans. You need to sort your visits out with your medical team.
Thank you for your kind words about the grounds in our apartment complex. It does keep me busy, and hopefully fit!
How did you celebrate the end of your treatment?
Fond thoughts.
Sylvia xxxx
0 -
Hello Michael and Hanieh
Thank you for your posts. I am going to take a break as I have some phone calls to make. I shall be in touch later.
Best wishes.
Sylvia
0 -
Hello Jrip
I forgot to say that I have read that you can get phlebitis with breast cancer. Ask your oncologist about this.
Fond thoughts.
Sylvia xxxx
0 -
Healthy eating, a rainbow of colours full of antioxidants.
0 -
Hello Michael,
It is very interesting learning about what your three step-children are doing. It looks as though Matthew will work his way up and eventually become an MP. As for Daisy, I would think it must be very hard working as a chef. Having to cook every day under pressure must be stressful and you are stuck in the middle between the boss shouting out orders and moans from customers if they are not satisfied. I think the work Alex is doing at a Camphill school must also be very stressful but very useful for society. All this must keep you very alert as these young people make their way through life.
As for Greece, I get the impression that the whole situation is unravelling and that the EU is into massive bullying.
I think that Germany is determined to push Greece out of the EU or at least out of the Eurozone. I think everything went wrong after the No vote was won in the referendum. The marvellous finance minister resigned on Monday morning because the big-wigs in the EU refused to cooperate unless he left. He was the fabric of that whole movement. A new finance minister was brought in (private education and Oxford here in the UK). From that moment the Greek government started to give in to the EU and make concessions. They went back on the terms of the referendum. The more concessions they made the more were asked. Germany was the big bully here and France was trying to be more moderate. I do not know what will happen now as there is still no agreement and a big summit for tonight has been cancelled.
Some experts are saying that Greece's loan should be written off. Others are saying that Greece should exit the Eurozone, have a period of toughing it out, revert to the drachma and then things will start to improve. That is the way I have understood it.
I think the EU is a big bureaucratic, undemocratic loony institution and that it should be dismantled. It just does not work.
I do hope it rains for you on Monday so that the parades get rained out. None of it makes any sense. In England I am fed up with anniversaries of wars and battles. We have been involved in so many that I am sure there could be one a day.
In one of the papers today there was an article about all the unnecessary surgery that is being done in hospitals and all the unnecessary medicine that is being given out. Somewhere else I was reading about more and more patients have no trust in doctors.
I hope you have a good week. What are you going to do tomorrow while others are marching for the battle of the Boyne?
Sending you best wishes.
Sylvia
0 -
Hello Hanieh,
I am so glad to know that you get pleasure out of the pictures that I post.
I do hope that you will get to read Vita magazine as I am sure the stories written there by cancer patients will make you feel good. The women there show us all that there is life after breast cancer.
Belated Happy Birthday greetings for Friday July 10th. I was glad to know you had an enjoyable time with your maternal aunts and cousins. You need to enjoy yourself, put breast cancer to the back of your mind and look forward to a happy life.
I was wondering why you did not tell your relatives about your breast cancer. It is so good to talk to people about it and bring this disease into the open. Any woman can get it, as well as men. Do the women in Iran have mammograms as we have here in the West for women over fifty and I think the powers that be want to lower it. The problem is that younger women have denser breasts so it is more difficult to detect them with mammograms. I am not sure what to think about mammograms because of the exposure to radiation. There are differing opinions about them. Some say they save lives and some say they do not.
Let us hope that there is some kind of breakthrough with the treatment of breast cancer and other cancers. The present treatment is so harsh, all three aspects of it. I was surprised to read recently that the chemotherapy drug fluorouracil (5-fu) dates back to about 1956. It is still used regularly in the combination FEC (fluorouracil, epirubicin, cyclophosphamide).
I agree with you that we need to stay together on the thread and share our efforts and feelings as we move beyond cancer together. This is very important and I know that there are charities that have classes exactly for this, known as Moving On. Unfortunately a lot of women finish their treatment and then disappear off the thread. It probably is because they have been through so much on their cancer journey that they just want to forget about it all.
I do admire your depth of thought and feeling and these are wonderful assets that you have.
Take care.
Fond thoughts.
Sylvia xxxx
0 -
Hello Michael,
I see what you mean about those parades. I listened to the news this morning and could not believe that in one incident a young sixteen year old girl had been run over by a car and that, in another, someone had bitten the finger of a police officer, resulting in sixteen stitches in the finger!
The Greek saga continues, with the bullies winning. Now the Greek prime minister, having had to cave in, is having to try to defend himself from his own government.
I am so disillusioned with the stage of affairs here, there and everywhere.
On the news yesterday there was a bit of information about breast cancer. It said that a third of all women over 70 were being diagnosed with breast cancer and that older women were not aware of the signs to look for with breast cancer. Apparently all they knew was about discovering a lump. After all these years this is hard to believe.
The silly thing is that having said about breast cancer occurring in a third of all women over 70, they added that mass screening for breast cancer stopped at 70! Where is the common sense in this? It means that mass screening takes place between 50 and 69. I do sometimes wonder who thinks all this up.
I do hope we shall get more publicity about how important it is for women to do their own check ups once a month and to look at their breasts and look for any changes in the shape, inverted nipples and swelling, as well as feeling for any lumps. If they think there is anything unusual they should get it checked. As for breast cancer patients, post treatment, if they have had mastectomies they should look for any signs of rashes on the scar line or for lack of smoothness over that area, and get that checked. I suppose this would be the same for lumpectomies.
I do think women need to take charge of their bodies and their general health.
I also heard on the news that more cancers are caused through poor diet than through smoking and drinking alcohol. George Osborne's cuts will not help the poorest in society to look after their health and the national health service will suffer.
Yesterday I watched a programme on BBC2 featuring the four leadership candidates for Labour before an audience of mainly Labour people, supporters, members or lapsed. Apart from Jeremy Corbyn I thought the other three were useless. Did you happen to see it?
Did you see Channel 4 News? Jeremy Corbyn was interviewed and the interviewer was out of order. I think the media are out to discredit him. He is too profound for the lightweight society of sound-bites in which we live.
I think I had better get off my soapbox and try to face the day.
Do you think we are making much progress in the UK with the treatment of cancer in general and breast cancer in particular? Have you read all the latest news from Cancer Active? What do you think about immunotherapy, the fourth dimension, as a standard treatment for cancer? What do you think about Proton Beam Therapy? I understand a couple of centres are going to be opened up in the UK.
Do you have any comments on IPT – insulin potentiation therapy?
Wishing you and everyone else a good day.
Sylvia.
0 -
Hello everyone,
I know it is summer and everyone is probably taking a break and thinking of other things, but I thought I would try to get the focus squarely back on breast cancer. Raymond thinks I have been on my soapbox too long, but I do think talking about ourselves and interests is a good form of therapy.
I am going back looking at information I have posted in the past, so that people just joining in have the information.
I was wondering whether any of you were given causes or risk factors for your triple negative breast cancers or breast cancer in general. I was not given any causes or risk factors for triple negative breast cancer in particular, only general causes or risk factors. You probably know them already. The following were mentioned to me.
Early onset of periods.
Late menopause (55 and over).
Not having had any children.
Having had children late in life.
Being overweight.
Smoking and drinking alcohol.
Perhaps diet, especially too much fat, meat and dairy products.
Perhaps stress.
Chest X-rays as a child.
A strong family history of breast cancer.
I think a lot of these would apply more to hormonal sensitive breast cancer and the oestrogen factor. However, my oncologist told me recently that my triple negative breast cancer may not have started as that and it may have mutated from something else. That is quite difficult to comprehend.
I discovered through my own research the possible connections with an over active parathyroid gland, exposure to light at night, and even a connection with root-canal work. I wonder whether we shall ever know for certain what caused our breast cancer, but am convinced it will be multi-causal.
Of course, with triple negative, there are the statistics about younger women being more affected, and white women being less affected than black women and Hispanics, especially in the States. I would be interested to hear some of your own views and experiences.
Best wishes to all.
Sylvia
0 -
Hello everyone,
Here is some information about different types of breast cancer.
Medullary breast cancer.
This is a rare type of breast cancer that represents 3 - 5% of all breast cancers and affects all ages. It is more common in women diagnosed with the faulty BRCA 1 gene. It is generally triple negative but not always. It has a better prognosis than women with other types of breast cancer. The name comes from the fact that it looks like medulla, the grey matter of the brain.
Lobular breast cancer.
This type of cancer represents about 15% of all breast cancers. It is usually ER+, but can be negative. Most lobular breast cancers are HER-. On the information I was reading there was no mention of progesterone status. Another piece of information mentioned that lobular breast cancer represented 5 - 10% of all breast cancers, and that this type of cancer does not always appear as a lump.
Basal-like breast cancer.
These are usually triple negative, but not all triple negatives are basal.
Triple negative breast cancer.
These can be basal-like but not always. The majority of BRCA1 cancers are triple negative. This type of cancer represents about 20% of all breast cancers. This figure probably includes the various sub-groups of triple negatives.
Paget's disease.
This type of breast cancer affects the nipples. It represents 1% of all breast cancers.
Inflammatory breast cancer.
This is a very serious form of breast cancer and represents 1% of all breast cancers. Women are surviving this because of very effective chemotherapy drugs.
Non-invasive breast cancers ( Ductal Carcinoma In-Situ DCIS and Lobular Carcinoma In-Situ LCIS).
I do not know what percentage of cancers this represents. Some people have told me they are not included in the breast cancer statistics.
Tubular breast cancers.
These are slow growing tube-shaped cancers.
Mucinous breast cancers.
These contain a mucous protein.
Rare breast cancers.
These include sarcomas of the breast.
There appears to be so much more information available since I was diagnosed ten years ago. I think that those of you going through treatment today would be advised to obtain as much information from your medical team as possible, because it is in your interests. It is only my own personal opinion, but I think that everyone should know the precise details about their tumour, and the treatment available. It seems to me common-sense that those of us with triple negative should know more than just ER-, PR- and HER2-. I think those of you going through treatment now should know whether it is basal-like, whether it is medullary. I also think that a diagnosis of triple negative should enable everyone to be tested for the BRCA1 or BRCA2 genes. I think the NHS should provide this, as going privately is too expensive. There is a lot of waste in the NHS, and I think that our taxes should give priority to first-class treatment for every patient and accessibility to all available drugs and tests. We have to learn to push, as the American women do.
Best wishes.
Sylvia
0 -
Hi Sylvia
I have just read on Twitter, that surveys show Jeremy Corbyn in second place in the leadership contest but they think that it underestimates his actual support. Apparently the support is coming from young party members. I saw the C4 news interview and I thought it was a disgrace. I used to love C4 news and watched it from the beginning but in the last year it has become trashy with John Snow sometimes appearing to be an oaf.
I was in Brentwood over the past couple of days and missed the marches. I even saw Matthew being interviewed on BBC news London. He did well, I didn't have a clue what he was on about though.😀
It looks like the bailout of Greece isn't going to happen. The IMF have scuppered the deal, making the EU look even more foolish. It is well worth following an economist called David McWilliams. He has been exposing the weaknesses in the Euro for years; it is a pity you don't use twitter as he posts there a lot. I think you would enjoy Twitter; it doesn't require any input from its users.
I think you are right about taking charge of our own health. Women are better than men, who, would rather die than go to a doctor.
Michael
0 -
Hello Michael,
I have just been looking up some things on the internet and decided to do a post. Your post appeared just as I was about to post.
I was interested to know that Jeremy Corbyn is in second place and I do so hope he wins, but I know that the media will do everything to discredit him. I would not be surprised that he is really winning but the media will manipulate the results. Remember then opinion polls before the last election and before the Scottish referendum. I was really annoyed with the way Kristian Guru-Murphy conducted that interview. The trouble is everybody seems to be into sound bites and they take a few words out of context and completely distort the meaning. I do not like Channel 4 any more and I get the news from RT and watch the programmes on there.
I see from your post that you managed to escape the marches and I do not blame you. I bet it was interesting to see Matthew being interviewed on BBC News London. I do hope he was saying that the 'nasty party' is on top form for nastiness.
As far as Greece goes, I cannot believe all the time and energy (not to mention money) that has been spent on an exercise in futility. I am just wondering what is going to happen next, but I think the EU has ruined Greece. I think it is ridiculous to keep comparing the countries of the EU to the States of the US. The last news that I heard the Greek Prime Minister was not getting the support of his government and rightly so. What is the point of a referendum if the results are ignored.
Thank you for giving me the name David McWilliams. I shall look him up. I shall have to have another think about Twitter. It does sound useful and interesting.
I was about to do a post on something that I saw on the front page of the Daily Express yesterday. The title of the article was "New drug cancer: Breakthrough as scientists find key to stopping disease". It goes on to say that a new drug treatment that could finally cure cancer is being tested in breakthrough human trials. It is all about stopping metastasis, which is the real killer in cancer. Experts apparently now believe a rogue protein causes cells to multiply and spread, attacking the body and its vital organs with devastating consequences. American scientists are starting world-tests of a drug aimed at zapping the protein.
New research on prostate cancer sufferers shows stopping the disease could be as simple as switching off a molecule known as DNA-Pkcs. It is being touted as a cure. If you Google "cancer cure daily express july 14th" you find more details.
Yesterday morning I listened to a programme about Life Long Health and Ageing: National Survey of Health and Development. This was most interesting and was about how in 1946 about 3,000 babies were put into a survey that would follow them through life, making note of their health etc. They had scans and all sorts of tests. These babies will be 70 next year and they have found all kinds of information about them, their health, development, ageing etc. You can find this easily if you Google "Lifelong Health and Ageing Survey". It deals with all aspects of these babies' lives. It is done by the Medical Research Council. Under the heading What's new? I just happened to notice the heading "Potential new indicator of breast cancer risk identified by latest study". I have to have a read of it and I shall do that tomorrow.
Raymond and I have signed various petitions on line this week. One was against fox hunting from 38 degrees, but the debate and vote today was cancelled because the SNP stepped in to make sure the government would get defeated in its attempt to reinstate fox hunting. Wehave also signed a petition from Jeremy Corbyn for an anti-austerity platform. Today we signed yet another one against union bashing. Workers need them for protection.
I suppose you are back in Northern Ireland now and I hope all is peaceful. It has been a very humid day here and a needed storm and lots of rain just will not happen.
I am still finding it a bit strange being cut off from the hospital but I suppose I shall adjust.
A last thought. We are constantly that alcohol and sugar are risk factors in breast cancer and other cancers, and yet the cancer charities seem to do a lot of fund raising through cheese and wine evenings and bake sales!!! It does not make sense to me. There is a big wine evening coming up here in Exmouth with one of the charities, but I somehow think it is wrong. What do you think?
That is about all. Exmouth is awash with young children and teenagers. It is as though they have liberated them from the schools in one go. They were all sitting on the pavements and walls along the sea front today. The youngest had their sketch pads and were drawing the clock tower with all the flags flying, and others were sketching the lifeboat centre and the lifeboat.
Best wishes.
Sylvia
0 -
Hi Sylvia
Thanks a lot for all your information.
Right now in Iran we are all celebrating the success in 1+5 negotiations. In fact the majority of of Iranians are against any form of violence and war and we love to be in harmony with all worldwide efforts to be in peace. Unfortunately here in Iran there are some powerful minorities who have left a a bad impression of Iranians in the eyes of the world and because of them we have suffered a lot of difficulties . But now we have gained hope for our future and better days for our children. I hope one day the world can see the real picture of Iranians who have respect for all the people and nations and love to be in peace with all the world.
Lots of love
Hanieh
0 -
Hi Sylvia Again
I had this chance of detecting my disease in its early stage by doing self -exams. In fact in Iran all the media are trying to bring awareness of the most common diseases to the public and because of that I did self-exams. Here all women over 40 are recommended to have yearly mammographis as breast cancer is highly common.
Sylvia, the reason my husband and I did not like to let the relatives know anything about my cancer was that we needed to keep our spirits as we were not sure about their reactions. We thought they might either show pity or say something that -though without any bad intentions - would make things worse. Moreover, I didn't have the heart to make my loved ones worried and afraid. Seeing my family' s sorrow especially my parents was already a big burden. Yet I never lose any chance to tell all around me to take care of themselves.
I hope to see all healthy and happy.
Lots of love
Hanieh
0 -
Hi Sylvia
Just a quickie. I looked up the Express article and then looked at the drug. I have a feeling someone on my NHL group is on a trial of that drug and are not doing too well. I will check and I could well be wrong as I am read the posts.
I see the drug company are recruiting patients.
https://globalmedicaldiscovery.com/clinical-trials...Michael
0 -
Hello Hanieh,
I can understand how people are celebrating the success of the latest negotiations for peace. War serves no purpose. I cannot understand how anything can be achieved by bombing countries to bits and killing people. I think ordinary people want to live in peace with their families and create better futures for their children.
Thank you for your second post. I was interested to know that in Iran all women over 40 are recommended to have yearly mammograms. I did not know that breast cancer was very common in your country. Here in the UK three-yearly mammograms are given for women 50 to 70 years of age. This is through the National Health Service. I suppose that women under that age can get them done privately and pay.
There is quite a lot of controversy about mammograms. Some experts believe firmly in them and others say they serve no purpose, subject women to radiation which in itself is a cause of cancer, and apparently there are also lots of false positives. Some say that tiny lumps show up and get aggressive treatment when they might never have caused a problem. There is also controversy about DCIS (ductal carcinoma in situ) which are really deposits and yet they get aggressive cancer treatment which some say are not necessary. In fact, some say DCIS is a pre-cancerous state which may never develop into full blown cancer. I suppose in the end you just have to make up your own mind.
I think it is very important for women to do their own self-examination every month, after being shown how to do it and had it explained to them exactly what to look for.
I think nutrition and physical activities are very important.
I do understand why you and your husband did not tell others about your breast cancer. I remember wanting to keep it to myself initially, but one of the neighbours here, used to seeing Raymond and I together all the time, noticed that I was not out so much, and asked him if I was alright. Raymond then told here the truth and of course it got round the complex here and every one was sending Best Wishes cards. I have a younger brother in Exmouth, but I did not tell him for about four months. I told him just before I started chemotherapy. Most of the family at the time, elderly uncles and aunts, were in the south east of the country, so I just continued talking normally to them on the phone. I only told them after I had finished treatment. As you say, you do not want to worry them and unless you have been through cancer, other people do not understand all the implications. It is true that the word cancer frightens people, but not as much now as in the past, when it was a disease that was all very hush hush.
The statistics for cancer are not good. The forecast is that half of us will develop cancer at some point in our lives. Apparently the milestone applies to those born 1960 onwards. It means a child born today has a one in two chance of developing cancer at some point in their lifetime.
I think the increase in all types of cancer must have something to do with lifestyle worldwide and is especially bad in the west, where we have too much processed food, a sedentary lifestyle and too much negative stress, not to mention chemicals and pollutants. Individually we have to do what we can to help ourselves to remain healthy. There seems to be an explosion in all chronic illnesses, especially diabetes 2 which is an awful disease.
I think doctors are dishing out too many pills. One of the latest is statins, which have awful side effects and are a cause of diabetes and yet they are being given to diabetic patients! It is so good that we have this forum to get out information.
To keep your spirits up you might to click on, on this forum, Inspiring Stories from around the World. I find them very interesting and I did write my own story at the request of the moderators, so you will find it there. You could write your own.
Sending you fond greetings. Keep well.
Sylvia xxxx
0 -
Hello Michael,
Thank you for the link you sent. I just had a look at it and found it most interesting. I was interested to know that someone in your non-Hodgkins lymphoma group is on a trial of that drug and is not doing well. What is happening to that person? Is it that the drug has stopped working or are there awful side effects?
Did you have a look at the column on the right of the article from that link. There is so much going on with all kinds of diseases. The last one mentioned on that column is to do with breast cancer, but it is quite technical but is obviously something to do with patients that become chemo-resistant. Have a look at it and see if you can decipher it.
I listened to the weather forecast this morning and again there is no rain for Exmouth, but plenty for Northern Ireland. We desperately need rain here as the grass is turning brown. I was going to do some watering of the flower beds but have decided I do not feel up to it today. I want to spend some time reading the Guardian from Tuesday and Wednesday and would also like to spend some time catching up on my reading of some French magazines. I need more hours in the day.
Best wishes.
Sylvia.
0 -
Hello everyone,
I am again posting one of my old posts from 2010 which I feel is still relevant today and will be of use to any newcomers that may be viewing. For those viewing I do encourage not to be shy about posting.
Best wishes to all.
Sylvia
===============================
I thought I would pass on a bit of information that I picked up yesterday. A friend of a friend was diagnosed recently with hormonal breast cancer and had a lumpectomy. She did not need chemotherapy, but she did need radiotherapy. She was offered a place in a randomised trial for radiotherapy, during which three different methods of radiotherapy were being trialled. She was given the middle method. I was wondering whether any of you recently diagnosed and going through radiotherapy can give information about these trials or let us know if you are in one of these trials. Do not hesitate to post your information, because we need to keep up to date and know what is on offer. I did read sometime ago about proton radiotherapy, which is supposed to be less damaging to the body, but I read it was not readily available on the NHS.
Last week, in one of the newspapers, there was an article about "Why is everybody getting cancer?" If you read it, your comments would be welcome. It stated that cancer rates are doubling or trebling. In fact, it said that breast cancer rates for men are quadrupling. It said that the natural causes of cancer were UV rays from the sun, radon gas, bacteria and viruses. It further commented on lifestyle, with smoking, drinking alcohol, obesity, diet and modern living being the biggest culprits, causing untold damage to our bodies. Also mentioned were pesticides, hormone disrupting and carcinogenic chemicals. Do you have any comments?
I have been reading more about TP53, which is said to be one of the most commonly mutated suppressor genes in human cancer. Silencing of this gene in a process known as methylation allows cancer cells to proliferate. As I have mentioned before, this came to my notice when I was first diagnosed as possibly implicated in triple negative breast cancer.
Another bit of information in the news recently is about the drug lapatanib, which looks as though it may help survival time for those with metastatic breast cancer. This was a drug that NICE was not recommending because of the cost. It appears that NICE has now changed its mind and will allow its use. It has also come to my attention that cisplatin (chemotherapy) is being used in the treatment of breast cancer. I think it is being added to taxotere (docetaxel).
0 -
Hello everyone again,
I am still watching Super Foods, the Real Story, at 8:30pm (Monday) on Channel 4. This is an interesting programme in which so-called super foods are put to the scientific test. This week it was about the grain, quinoa (pronounced kinwa) which is very much in vogue and described as a super food. It was comparing it to white rice, which I thought was not quite fair and thought it should have been compared to wholegrain rice. We all know that white rice has been too processed, has no nutritional value, is just starch and sends your blood sugar soaring.
Quinoa was found to be high in protein, full of nutrients such as important minerals, and a good source of fibre. It was found to be a super food.
The other super food going through scientific testing was broccoli, which also came out as a super food. I thinkk all of us on this thread already know this or at least that it is a good anti-cancer food to be eating, along with all the other members of the cabbage family.
The other food tested was spirulina. This is a form of algae and is sold in powder form in places like Holland and Barrett and is very expensive. It did not get a very good rating, but it was said it was good for those in the space station because it is light and easy to transport.
This was the third programme of four. Try to watch the last one.
That is all for now. Some comments would be nice.
Fond thoughts.
Sylvia
0 -
hi Sylvia / everyone
Hope you are all doing well. I've just had a lovely weekend in Chester also booked two holidays one to Majorca on Wednesday and another to madiera a week later. Oncologist has given me the go ahead, I'm taking factor 50+ and lots of scarfs to put around my chest. Living life to the full.
Sylvia I think the same as you with regards to cheese and wine/ cake fund raising for cancer events. I'm glad I'm not the only one who thinks this . Also in hospital they bring around biscuits on the cancer ward . I saw one nurse giving a chap who was diabetic and also had cancer a packet of biscuits. I found this crazy but then thought ...is it just me being over the top.
I also agree with doctors giving out statins like smarties. I know a number of people who have had really bad side effects from them. My mum had them for a short time but stopped taking them as they made her ill. Another lady who came into the opticians suffered with terrible depression on them.
With regards to politics I can't comment I know nothing about the subject. I do however believe that war and violence achieves nothing and the majority of people throughout the world feel the same.
Wishing you all a lovely weekend
Amanda
0 -
Hi Sylvia and everyone
Of course nutrition is the most important factor for leading a healthy life. Fruit and vegetables play a crucial role and vegetarians may be able to enjoy healthier life. So, I usually try to eat a variety of fruit and vegetables daily, yet the ones that are in season as you can find most of them all the time of the year . I'm not sure whether I am right in assuming that the out of season fruit and vegetables can not be of any help.
Yet about dairies I have not reached any conclusions whether they should be in our diet or not. Some doctors recommend them and some prohibit them. Do you have any clue as to who can be right?
Also, since the end of my treatment I have limited red meat to a large extend. Yet I don't know what to do with chicken which is believed to be highly hormonal.
I would really appreciate if you let me know what you believe about these issues.
Lots of love
Hanieh
0 -
Hello Amanda,
It is nice to hear from you and to know that you are getting on with your life, post-treatment. I do hope you have a nice time over the next couple of weeks with your holidays to Majorca and Madeira. Make sure you take care of your skin and I would think that factor 50+ will do the trick. You are right to live life to the full.
I was glad to know that you shared my thoughts about raising funds through cake, wine and cheese. I think the best way to raise funds is through money donations. I hope charities make good use of the money because lately we have heard tales here of money being wasted. I also share your views on the biscuits being distributed in hospitals and some of the meals. I suppose that they are having to serve up what people will eat. I can understand your concern about a nurse giving biscuits to a patient with diabetes and cancer. It is strange that some people cannot equate their diet with illness and also how some people prefer to swallow pills from the doctor, rather than change their diet. They seem to think a pill will work miracles even if they make no changes to their diet. I remember how shocked I was when going through radiotherapy that one woman came in all sunburnt, having gone out in the sun at the weekend during the break from the radiotherapy! It was also common to see radiotherapy patients smoking outside the radiotherapy unit while waiting for their treatment. This is why I think the NHS is in so much trouble. Patients have to take responsibility for their health and play their part in getting better.
I was shocked yesterday to hear on the news that the NHS is at breaking point. They were showing queues of ambulances outside A&E waiting to off-load their patients and the hospitals not able to take the patients because they were overwhelmed. My big question is why are so many people having so many health problems?
I think doctors have to take some responsibility too. I am dead against all these statins. I have read about all the lethal side effects but still they are being dished out. I read they cause diabetes and yet one of my cousins is diabetic and has been on them for years. He does not take care of himself and he needs to be read the riot act about his diet, but doctors say nothing. I also know lots of people who have had terrible side effects from statins and feel so much better when they stop taking them. I have read that another thing that statins cause is cataracts.
You probably know more than you think about politics, because politics is about everyday life. I think our proudest moment in this country was the introduction of the NHS in 1948, but the NHS is now being destroyed. I also believe that it is the duty of a government to take care of its people from the cradle to the grave, something that was brought in in 1945. That was another proud moment and something that is being destroyed. We read now all the time about the number of children in this rich country living in poverty and we cannot hold our heads high while this is happening.
It must be interesting working in an opticians. What exactly do you do?
I do hope you have a good holiday. Please keep in touch.
Fond thoughts.
Sylvia xxxx
0
