Calling all triple negative breast cancer patients in the UK
Comments
-
Big leggy: Yes of course you can join. You need to first find the October Optimists page on the Breast Cancer Care website Forum. It is the Going Through Treatment discussion board under the heading Chemotherapy Monthly threads. It is called October Optimists 2013. Lulu is running the Facebook group and adding people. Just go into the thread and introduce yourself then message Lulu with your Facebook name so she can then add you.
Best wishes and look forward to seeing you there.
I am surprised you are not getting a taxane as it was, I thought, routine for triple negative. My oncologist said it was a more aggressive treatment for triple neg. You are grade 3 too. I don't have lymph node involvement either and I am only grade 2, with a 1.8 mm tumour before SNB yet am getting Docetaxel for treatments 4-6. I also wonder why the bone scan but not the taxane.
Anne x0 -
My oncologist at my last pre chemo appointment, specifically told me about the nails and how they may change, so clearly not all are in denial about that. I was told I would get aches and pains on the taxane and maybe some pins and needles, but neuropathy would not be a big problem.
Going back to taxanes, I understand they are not given routinely here for chemo in the UK, but only when a more aggressive treatment is needed, like for tn. I will try to find the link where I read this. But all the reading of research I have done around chemo and triple negative, recommends taxanes. So I second Sylvia's suggestion that you get another opinion, big leggy. Or even show them some research, if you've got the nerve!
Good news about your bone scan, Jackpot.
Anne0 -
Oh I have the nerve Anne... watch this space! :-)
Thank you for all of your info ladies... xx
Sandr
0 -
hi all
Thanks everyone the Bone scan results were a big relief
I was shocked too at the denial of side affects I think I just got a dr very protective of his chemo drugs
Big leggy even though you had no node involvement you are grade 3, can you get a second opinion on the regime your on, it still seems strange not to be on taxotere
My names "gill" by the way
Take care everyone
Jackpot0 -
I recall reading somewhere (don't know where anymore) that survival rates were improved with the addition of Taxanes to a regime. I was the only TN in my chemo dept. on Fridays and all of the hormone positives were also on Taxol so I think the survival rates must be for BC in general. Like you need the added complication of needing to fight for your taxane! Unreal.0 -
Way to go Anne on a successful first chemo. I think #1 is the hardest and you are over the first hurdle!0 -
Looking through all your profiles it appears that the only other person who had FEC and no taxane is peterandliz. I wonder... Are you based in Scotland?
Sandra... xx
0 -
Hi Sandra,
We were told by our onc that T was the" in thing drug" at the moment and in his opinion was not needed and would not necessarily help!
Liz decided against it but we were offered it. We are in Norfolk.
I do think Liz should have had "T" but I know a lot more now than I did then.
Liz also decided on the strength of her FEC chemo. Liz only had 2 or 3 at the 100% standard dose the other 3 or 4 doses we reduced down to about 70%. We did this because Liz is very sensitive to drugs in general and we decided it may be to much for her to handle.
I think this was the right thing to do especially when you read that they do not know if it makes any difference the amount you have. They give you enough to nearly kill you but not quite enough to finish you off, then stop hoping it will kill off any stray cancer cells.
Peter0 -
Peter - that is quite the description of chemo drugs "giving enough to almost kill us, but not quite enough to finish us off" ! I wonder why so many of us take these drugs? I am guessing it is because we are all scared and no-one really knows to what extent they help us, but we are willing to risk our health in order to live a longer life! Certainly something to ponder!! I also had reduced chemo drugs - simply because I was paranoid of the side effects and the quality of my life - I was most fortunate in having a very accommodating oncologist.
This coming Monday I am having my first post treatment mammogram, and I would have to say that I am not looking forward to it at all. I am hoping that all will be well.
Hope everyone has a good weekend with minimal side effects and good sleeps!0 -
I read somewhere yesterday that in the US all chemo patients get taxanes and in Europe we haven't caught on yet. From my reading it does look like it increases your odds. There are lots of research papers on the Internet on chemo and triple negative, which back this up. Clearly some hospitals are noting this research and others aren't.
Anne0 -
Hello Michael
Thank you for your post. I do hope you will have an enjoyable break in Portugal. I did go there many years ago around the Faro area and did enjoy it. Let us know how you find it now.
I do hope that your home will soon be restored to order and that you, Alex and the dog will be good housemates. I have read many times that the vegan diet is the healthiest one for us to be on. The other week I heard someone say that it is now being referred to as a non-animal diet because of the negative associations with the word vegan!!!! I think it is good that Alex, as a young person, is taking care of his health. I am practically a non-animal food eater and have been for quite some time. I do not eat any meat or poultry, any dairy products and eat mainly fruit and vegetables, nuts and seeds, some beans and pulses, and some bread. I eat some fish, mainly oily fish, and some prawns, but I could easily give these up. I do have enriched fresh soy unsweetened milk, fresh soy plain unsweetened yoghurt. I was wondering how this compares to what Alex is eating. I eat very plain food and can get a nutritious meal ready very quickly. A typical main meal would be a small portion of fish, a couple of new potatoes, carrots, and a mixture of green vegetables such as broccoli, cauliflower, Brussels sprouts and, yes, some cabbage! I tend to buy fresh sweetheart cabbage which you can cook in just a few minutes. I always have some fried tomatoes cooked in olive or canola oil, and this acts as quite good gravy and adds taste. I sometimes add a large spoonful of hummus into which I have mixed some turmeric and I often add some kelp for iodine.
I do eat porridge as well.
With all my food I try to buy organic when I can. I also buy frozen non-gm soy beans which are the best source of protein you can have.
I do agree with you about breast cancer and indeed most cancers. I think a cure if it ever comes is far off. As you say the disease is just too complex.
I agree with you that what we are getting is disease-free survival for longer periods but not overall survival improvement.
The weather here in Exmouth is very mild, abnormally so, but we are getting a lot of rain. I think the plants think it is spring!
Wishing you all the best and look forward to hearing from you.
Sylvia0 -
Hello Anne
Thank you for your post and I was so glad to know that your first chemotherapy went well. I think it was a good idea to go to bed early and get your sleep and rest in bits and pieces if that is what happens. I went to bed very early throughout my treatment and often went for rests in the afternoon. Even if you do not sleep, I think the rest helps your body to recover and helps the immune system.
I was glad to know you were feeling well the day after your chemotherapy.
It is good news if you can eat normally, as it will help recovery. I think good food is the best medicine. It was also good that you were able to go out and take your daughter to meet her dad and have a pub lunch. Anything that takes your mind off your treatment must be good. Just be careful not to pick up any infections as you will be vulnerable to this.
I am interested in what goes on at the Breast Cancer Care Forum, as it is important to keep up to date about information and to know what as many women as possible are experiencing. It is also important to pick up any tips. I think all threads are important but it is also important to have an overall picture of cancer treatment and to bind it all together. We all go through the same treatment for breast cancer, whatever kind it is, and whatever the receptor status with additional things for hormonal such as tamoxifen and Arimidex and Herceptin if we are HER2+. We all have a mixture of mammograms, ultrasounds, scans, check ups etc.
I think you are right to concentrate on one thing at a time and for you it is chemotherapy. I think that the triple negative receptor status may have started to get too much emphasis because it was so very much in the dark not that many years ago and started to get bad press because there was and is no medication that can be taken after standard treatment. I have always seen that as plus.
I think it is such a good idea that you are in touch with other people who are on the same chemotherapy treatment as you are, even if they are not TN.
Keep up the good work and let us know how you get on from now until the next treatment.
Fond thoughts.
Sylvia xxxx0 -
Hello Jackpot (Gill)
Thank you for your post. I was so glad to know that your bone scan was clear and know what relief that brings.
I do not like the sound of the doctor you saw and I think doctors like that need to take a course in how to communicate with patients. Some seem to have no idea about the anxiety and fear that patients go through waiting for any kind of check up, having the check up, waiting for the results and then hearing the results.
That doctor is definitely wrong about docetaxel (Taxotere) and peripheral neuropathy. My own oncologist told me that the peripheral neuropathy that I have was definitely caused by the Taxotere. I did not know in advance that Taxotere could cause neuropathy. After I had finished all my treatment I felt that the soles of my feet did not feel quite right. Eventually I saw a podiatrist for another reason and asked her to test my feet for possible peripheral neuropathy. She did this and gave a definite diagnosis of it. I then told my oncologist and she said it was the Taxotere that had caused it. Of course, you must not go thinking that you will definitely get it. According to information on this thread icing the feet prevents it. This was never mentioned to me during treatment. I did ask about an icecap to prevent hair loss and my oncologist told me she was against it for fear of infection. Remember that was back in 2005 and opinions may have changed since.
I do hope you will get back to feeling more normal as the days go by and you will be able to eat some nutritious food. Remember little and often is best.
I am glad that your Facebook group helps. Patients do get hospitalised for problems with low white blood cells (neutropenia) and low red blood cells. I never had any problems. I kept my red blood cells normal with iron tablets, prunes and dried figs. The prunes and figs also kept constipation at bay. I think to keep white blood cells normal you need to be vigilant about avoiding infection.
I have not seen my friend since her second chemotherapy but hope to do so during the weekend. I know that her appointment on the 16th was postponed because they did not have one of the drugs. Can you believe this? She went the next day. I know she is having Taxotere as well as a monoclonal antibody drug, (son of Herceptin) as she is HER2+.
I hope you niece will be OK.
Fond thoughts.
Sylvia xxxx0 -
Hi Sylvia and all,
Below is an interview on Lulu. Anne and Gill are already in Lulu's Facebook group. Liz went through chemo the same time as Lulu 2 years ago and they have been Facebook friends ever since. She is the one I mentioned a couple of weeks ago. She lives life to the full but is one of the kindest people I have come across. She is always on Facebook offering advice. She also runs a student nurse website! She is on a trial were she has a new type of chemo 2 days a week for 12 weeks.
http://katydidcancer.blogspot.co.uk/2013/10/day-1215-baby-elephant-story-2.html
Peter0 -
Hello big_leggy
Thank you for your post. I was sorry to read that you have a bad cold and I do hope you will be clear of it before Wednesday. I hope they will not delay your treatment. It seems to happen quite often that people have a flu jab and then get a cold! I stopped having flu jabs three years ago when my GP would not tell me what was in the flu jab.
Sandra, I cannot be sure about why your oncologist has decided against using any taxanes in your regime. I just know that we are all individual and that the oncologist and the rest of your team will have discussed this. I tend to think that because both paclitaxel (Taxol) and docetaxel (Taxotere) affect the heart, this may be the reason. My oncologist told me, when I asked her why she had chosen Taxotere for me rather than Taxol, she said that Taxotere was less harmful on the heart than Taxol. I picked up on the word 'less' and concluded that both drugs affected the heart, but one not so much as the other. I was given and ECG before chemotherapy and after chemotherapy and my heart was normal. You could ask if the condition of your heart was the reason for not giving you a taxane.
It is of course good news that you have no lymph nodes affected, but I do not know whether that is a reason for not giving a taxane drug in the UK. I also remember that you are in Scotland, so there may be different policies. What you have to make sure is that it is not on cost grounds that a taxane is not being given. I do remember so well back in 2005 when I was diagnosed that drugs were being withheld by NICE in England and it was a real postcode lottery. Women were going to court here to get Herceptin. I can remember being told that I would get any drug that I needed.
If it were you I would definitely want to know what the MRI scan is for on November 7th which is just two weeks after your first chemotherapy.
I noticed in your details that you are stage 1 which is very early stage and that may be another reason for no taxane. As I said, if I were you I would get definite answers about the taxane and the MRI scan. In 2005 I had a CAT scan and a bone nucleide scan before and after treatment.
Look after yourself and let us know if you get any answers. If you cannot get answers at the hospital you might try a charity, such as Cancer Research UK, to find out what you want to know.
Fond thoughts.
Sylvia xxxx0 -
Thanks for posting that, Peter. Lulu is a great girl, and a very useful source of information on our forum.
Anne x0 -
Hello Susan
Thank you for your post. It was nice to hear from you. It is interesting to know that you had a taxane even though your lymph nodes were clear. We have to remember that we are comparing treatment in two different countries, Germany and the UK and that Germany gets good marks for cancer treatment and the UK does not. We also have to remember that in the UK, although we have the National Health Service, we have the strange situation whereby England, Scotland, Wales and Northern Ireland do not necessarily function in the same way for health care. I have always read that health care is better in Scotland. Scotland has a small population of about 5 million I think and England has nearly 60 million. It should all be done fairly but often is not. We also have devolved governments in Northern Ireland, Scotland and Wales, but not in England!!! We live in such a muddle really and everything really depends on the party in power. I believe that with your health you have to be outspoken here, but not impolite and fight to get what you want. We have to be our own best advocate.
I agree with you about the neuropathy and the nail problems. I have neuropathy and my toenails turned brown on Taxotere. Someone I know had most of her toenails fall out. However, you can live with neuropathy and the toenails grow back.
I agree with you that you have to fight your corner and be informed.
How is the radiotherapy going?
Fond thoughts.
Sylvia xxxx0 -
Hello again Anne
I just wanted to say thank you for the information about your situation and how you are getting docetaxel. It could be the difference between being under a hospital in London and being in Scotland. I am not saying that it is. All we can do is ask questions, get answers and have some kind of peace of mind.
I was interested to re-read your situation. Most TNBCs are grade 3 so it is good to be grade 2.
Have I missed something with Sandra (big_leggy). Is the MRI scan on November 7th a bone scan?
It is good to know that some oncologists are more forthcoming than others. I cannot see the point in not talking about possible side effects. It is better for patients to know what may happen so they are prepared and possible less frightened. With nails it is better to know they can discolour and fall out than to find them suddenly doing this.
With reference to taxanes and chemotherapy I think you do get them for hormonal breast cancer as well as for non-hormonal. My friend who is triple positive has certainly had them. I know other people who have had them. I think it depends on your hospital and perhaps your state of health and perhaps even your age. I think the older you are the more reluctant they are to give you these lethal drugs because your body is less able to withstand them.
Keep well.
Sylvia xxxx0 -
Hello peterandliz and adagio
I read your posts with interest. I agree that we do not have much choice but to take these toxic drugs. It is all that is on offer and it keeps us alive.
I would like to know whether patients are still being weighed and measured for height before getting their chemotherapy drugs. Before I started chemotherapy I was asked for my weight and height and told that the amount of chemotherapy drugs were administered according to these two factors. That makes sense to me.
I also remember my breast cancer consultant telling me when I first saw her that not all her patients were accepting treatment. I have no idea what happens if you go through your breast cancer without the orthodox treatment. I do not suppose we have any statistics on this. I was told if the breast cancer was not treated it could fungate, become smelly and break through your skin.
I think there are people who treat their cancer with the Gerson therapy. If anyone is having alternative treatment it would be interesting to hear from them.
Adagio, I hope all goes well on Monday with your post-treatment mammogram.
Fond thoughts to both of you.
Sylvia xxxx0 -
Hello peterandliz
Thank you so much for posting the link to the interview on Lulu. I have just read it with great interest and felt deeply moved by everything I read. I do hope the new trial will help. I do hope that the chemotherapy 2 days a week for 12 weeks will not be too harsh on her.
I must say that the picture of Lulu in that chair hooked up to chemotherapy really brought back memories.
It looks as though you have a nice group going on Lulu's Facebook group where Anne and Gill are already members. I hope we can exchange information and tips and offer support.
I noticed when reading the interview that there was mention of Google Friend Connect. Can you tell me what this is all about?
Thinking of you and all your friends going through breast cancer treatment.
Best wishes.
Sylvia0 -
Hello everyone posting and viewing.
Thank you for all your great information and effort on this thread. I hope you all have a good relaxing weekend and are then ready to start a new week.
To sam52, I hope all is well and that I shall hear from you soon.
To SamUK, I hope you had your cosmetic surgery and that all went well.
To MartOne, how are things going with your mother?
To InspiredbyDolce (Debra), I hope all is well with you.
To Carolben, I am concerned that we have not heard from you. Are you alright and are you still taking a break from chemotherapy?
Best wishes to you all.
Sylvia0 -
Hi Sylvia
I made a mistake when I said bone scan: I meant MRI. But in fact, don't MRI scans look at bones as well as everything else? I don't know.
Yes, I am lucky to be grade 2 and triple negative, rather than grade 3. I don't understand how they measure these things. When I was diagnosed in July with a 1.8 mm tumour I was told it had probably been there a year or so. Perhaps that's why it's Grade 2, because it is so small and hasn't grown much.
Re taxanes: I know that they are also used in the UK for hormone positive cancers too. But I thought only if HER2 positive (eg your friend who is triple positive) or if there is some other reason for concern like lymph node involvement or vascular invasion or high grade or later stage tumours. I wonder if people at stage 1 grade 1, who aren't triple negative or HER2 Positive, or don't have any of the other complications I mentioned above, ever get it. I understood the taxanes were used here in the UK only in less straight-forward diagnoses, where more aggressive chemo is needed, but I may be wrong. I believe HER 2 positive comes under that heading.
Regards,
Anne
I0 -
Hello linali (Lindsay)
Raymond and I were talking about the group on the thread not that long ago, all of whom were very interested in cooking and nutrition. You probably remember Maria_Malta and BernieEllen. I often wonder what has happened to them. You were part of that group and I remember you also liked cooking etc. It got me wondering how you were. I do hope all is well with you and your family and that you are getting the pain treatment and counselling you wanted. How is life at the centre? I do hope you will pop in some time soon.
Thinking of you.
Sylvia xxxx0 -
Hello Anne
I am not sure what each of the different scans pick up. I have never had an MRI scan or a PET scan, just a CAT scan and a bone nucleide scan before and after treatment. in the US these scans seem to be used a lot more but I am not sure whether that is good or bad.
Reading the threads over the years I do know that most TNBCs are grade 3 so it must be good to be grade 2. When I was diagnosed I could not find anyone else that had triple negative receptors. Of the people in my immediate neighbourhood that I know and who had breast cancer, they were all hormonal. They had lumpectomies, and radiotherapy and no chemotherapy. Another one had hormonal, a double mastectomy and radiotherapy and I think that was because she was very elderly. Another one had hormonal, had some chemotherapy but had to stop because of bad side effects. All these women are alive and doing well, except the elderly lady who died of old age! One of the women said she thought the cancer had been caused by long term use of HRT.
I am not sure whether there are hard and fast rules about who gets taxane. I think the oncologists weigh up the situation and decides on what is best for a particular patient. I do know I was told that it is better to be HER2- than HER2+. I think I go along with that because it means one less drug with harmful side effects to take and Herceptin is hard on the heart. Let us face it, there is no such thing as a 'safe' chemotherapy drug!
Hope you have a good weekend. I always enjoy reading your posts.
Fond thoughts.
Sylvia xxxx0 -
Thanks, Sylvia. That makes a lot of sense. I wold love to just say no to the chemo, but my stats, meaningless though I know they really are, suggest a 7 percent increase in my chance of being alive in ten years. To me that is a significant outcome. I would perhaps see it differently if not for my daughter though.
Anne0 -
Hi Sylvia,
Just looking at the posts I wish that I had logged in before I went to the session on Saturday as I could have asked more relevant questions.
There is always so little time and so many people wanting answers especially the newly diagnosed. Prof Kerins is head of breast cancer research as well as a surgeon and is on European boards etc. Regarding TNBC there doesn't appear to be anything new on the horizon but they are looking at all cancers individually and TNBC has more in common with some other cancers than with breast cancers and that is where they will be looking at more targeted and individual therapies in the future. He also was very enthusiastic about the test that will show whether chemo is of benefit or not to patients with breast cancer and feels that it will spare many patients from going through chemo.
With regards to myself I asked re genetic testing as I was over 50 when diagnosed and because of Damian's family history, 3 siblings and his father with cancer, was very concerned for Kerry and Leigh....... but it was the usual reply checks and vigilance. Also I was concerned about the link with Ovarian cancer but didn't really get a reply.
I did ask re metaformin and he said there is a debate about it but no conclusion. I never was certain why it is used but he explained that there was evidence to show that diabetic women who were on it had a lesser incidence of breast cancer. But he did say that increasingly weight and lifestyle are factors in keeping cancer at bay. He did say that treatments are evolving every day and the prognosis for all cancers is improving.
It is very frustrating to have such an expert in front of you and not to be able to get answers or new information to pass on.Also he is based in Galway and they seem to be more aware and knowledgeable than at my own treatment centre. I am so sorry that I didn't transfer when I had the opportunity.
I have spent the last few days feeling angry and quite negative as I have had my medical card withdrawn without any prior notice. Here in Ireland you have to pay from 45 to 60 euros for a GP visit and then pay face value for all medication.It can be double the price of the same drugs bought across the border in the north. I will now have to pay 144 euros a month for my medication on a scheme and for hospital visits too. As I have pain and other SE of treatment I do need to go to my GP quite often. I had been given a discretionary card because of the cancer until 2015 as your income has to be very low to qualify on financial grounds. Cancer is not on the list of serious or long term illnesses that qualify for cheaper medication. I think that this is the first time that I have been angry about my cancer and the changes that it has made in my life. I am not poor but I will have to choose between going to the doctor or maybe meeting a friend for lunch, or paying for the diesel to visit Kerry and Oskar and we wont be able to help them out as much. I apologise for the rant but I do feel that everything we go through to come out the other side often very much changed should have some kind of acknowledgement.
It does seem that no cancer consultants will discuss or forewarn us of any side effects of their treatments. I know that it can be frightening to hear but I would rather be aware and then it makes it better to manage them.I do know that many of the women who had T in there chemo do have SE in their fingers and toes.
I see that there has been some discussion around different regimes of chemo. I had 6 rounds of FEC and was offered a choice of how many and at what intervals. To be honest I didn't have a clue and said to the oncologist you are the expert you decide. He had just informed me that it may or may not work and would only improve the outcome by 6% so that I had to decide whether it was worth it. I had no node involvement and there was some question about whether I was pre or post menopause but decided to go ahead.
I tolerated the FEC and but did have an issue with my veins and did get a very bad sore throat. I would advice that iced water be drunk whilst chemo is given or some soothing fruit juice. Oral hygiene is very important.
The centre is so busy and we are knitting furiously and making beaded jewellery for a couple of fund raisers coming up. they also have started Set Dancing classes which are very energetic and I think that I will stick with thee Tai Chi. We will be visiting the Buddhist centre again on 1st December for a session with a Buddhist monk.
Well I'm sure that this is 2 weeks worth of posting and even if I don't post I do think of all of you especially in our healing meditation.0 -
Hello linali (Lindsay)
Thank you for your post. It was so nice to hear from you and to have a post of such substance.
You are so lucky to have this Professor Kerins who is head of breast cancer research as well as being a surgeon and on European boards. I can imagine that the newly diagnosed have a lot of questions to ask, although today there is so much about which they can already be informed through the internet and reading.
I do keep a look out for anything going on with specific reference to breast cancers with triple negative receptors, so I am not surprised to read that there is nothing new on the horizon. There is a limited pool of chemotherapy drugs that can be used for all cancers and the other treatment is surgery and radiotherapy. I do not see TNBC as a specific type of breast cancer, just receptor status. That is why I am always interested to know what type of breast cancer a person has, because it could be that how you cope and the success of treatment depends on this. The most common type of breast cancer appears to be invasive ductal carcinoma (IDC) but there are others such as DCIS, LCIS, lobular breast cancer and rarer ones such as inflammatory breast cancer and metaplastic breast cancer. I think a good question that you could ask is what are the statistics on survival rates with these other cancers and triple negative receptor status.
I have read that TNBC has a lot in common with prostate cancer, but I do not claim to know why. It seems to be something to do with androgen status. It is strange because prostate cancer is hormonal, but again some of it is more aggressive than others.
We have been told for a long time that research is looking at more targeted and individual therapies but they are a long time coming.
I would love to know more about the test that would show whether chemotherapy is of benefit or not to patients with breast cancer. That seems very important because there seems little point in putting patients through all the stress and toxicity of chemotherapy if it is of no benefit. I was dismayed once to read that paclitaxel (Taxol) was of benefit to only 3% of patients. I never take anything for gospel because there are so many contradictions. In my own case, I had chemotherapy before surgery because of a large tumour, and it did shrink it somewhat but I still had some tumour when I had a mastectomy. I shall never know whether, if I had had surgery first, and no chemotherapy, I would still be alive today. The same goes for radiotherapy. Would I have survived after surgery without radiotherapy? I do have a woman in my neighbourhood who had breast cancer and surgery over 25 years ago when she would have been about 28 and she is still alive today. She had no other treatment. What kind of breast cancer she had I have no idea. In the past patients were not told anything. Even 8 years and 4 months ago exactly, when I was diagnosed, my breast cancer consultant was surprised at all my questions and said most patients did not want to know anything and just wanted the treatment. I would be surprised if that is still the case because there is just too much information flying around.
I still think the best thing is for everyone to take care of their lifestyle and try to eat healthily, not get overweight and if overweight to slim down, to be physically active, and a bit of walking is enough, to avoid negative stress and get enough sleep.
I was told the same about genetic testing. That is, if it is genetic a person will develop it at an early age. Surely there must be exceptions? We are told that TNBC is more usual in younger women and more usual in afro-Americans and Hispanics in America, but again there will be exceptions as we older women know.
I was interested to know that you had asked about metformin and that you have been told no conclusions have been reached about this. I certainly do not think people should be self-medicating with this.
It could be that women with diabetes have fewer breast cancers because as diabetics they are following an anti-diabetic diet. This diet is the same healthy diet that we read about for an anti-cancer diet. It could be that it is this healthy diet that is keeping the breast cancer at bay and not the metformin. We all know that sugar is very unhealthy for us, that we should avoid it, because cancer cells thrive on it. I have recently heard sugar referred to as the white poison and it is everywhere in our food. Diabetics are also told to have a low glycemic diet and not to overdo carbohydrates, as these are converted into sugar in the body. Diabetics are also advised to lose excess weight and to keep active. What your professor said about weight and lifestyle factors in keeping cancer at bay certainly seem to ring true with the general messages going out today from all sources.
I think that most of our chronic and degenerative diseases are probably caused in the main by our western lifestyles, too much processed junk food deficient in nutrition, being too sedentary, having too much negative stress because of the extreme inequality in our societies, and too many chemicals in the environment. We have a minority of people with far too much and too many people living in poverty and having to choose whether to heat or eat.
I was really interested to know what you have been going through in Ireland with your medical system. I cannot believe that your medical card was withdrawn without any prior notice. I was surprised to learn that you have to pay 45 to 60 euros for a GP visit. Here in England there is no payment at source but it is paid for by National Insurance contributions at work. I do think people abuse it here and sometimes make unnecessary visits to their GP. The surgeries are always packed and it is now standard to have to wait 3 weeks to see the GP with whom you are registered. Prescriptions are free at source if you are over 60, under 18, or any benefits, or have a chronic illness. Again, because of this false perception of free prescriptions the system is abused. I have read that here only about 20% of people are paying for their prescriptions. The NHS is in dire straits and I think this is because of abuse. Doctors are not innocent either. I think they over-prescribe.
I shall continue later on as I need to take a break.
Watch this space.
Fond thoughts.
Sylvia xxxx0 -
Hello linali (Lindsay) again
I cannot believe that you are going to have to pay 144 euros a month for your medication and your hospital visits. If I were you I would try to get my medical card back. Your government was prepared to bail out the bankers or as I prefer to call them using the term used by Max Keiser on the Keiser Report on RT, the 'banksters', I think your government should look after its own people first, especially those who have been through life threatening illnesses and have to live with the side effects, probably for the rest of their life. I do not know what goes on now in this country about disability living allowance as the government is cutting everywhere. DLA used not to be income related.
I cannot believe that cancer is not on the list of serious or long term illness that qualifies for cheaper medication. What do people do if they are on hormonal medications for years?
Last week I watched Prime Minister's Question Time and heard one of the Labour MPs recount the case of a man who had recently died of cancer. In the name of cutting his benefits the company acting on behalf of the government to declare people fit for work and off benefits, had called him in and declared him fit for work. He was told his appeal would take 11 months, and he died a few weeks later. So much for being fit for work!!!
I do agree that we should get help with all the needs that arise from having a diagnosis of cancer. That is the way it is supposed to work here. You are supposed to get help for the needs arising from having had cancer. There are certainly are needs.
Please continue to post as all this information is useful.
Thinking of you and sending best wishes to you and Leigh, Kerry and little Oskar and of course your other half.
Sylvia xxxx0 -
Hello everyone
I thought the following snippet from one of today's papers (The Daily Express) that I read for a bit of relaxation, might be of interest to you.
The title is How to be happy? Let's spell it out.
Happiness- what does it mean to you? The first day of a holiday or the hug of a grandchild? We could say that happiness is a different thing to all of us, but if we wanted to create a happier society with so many differing 'joy' factors, where would we start?
ACTION FOR HAPPINESS is a group intent on creating the conditions for a much happier society. Through its dedication and research, it has compiled '10 Keys For Happier Living' that are simple actions which seriously improve your life and those around you.
The initials combine to spell out Great Dream. Here they are.
Giving: do things for others.
Relating: connect with people.
Exercising: keep fit.
Appreciating: notice the small things.
Trying out: learn new things.
Direction: have goals.
Resilience: find ways to bounce back.
Emotion: be positive.
Acceptance: be comfortable with who you are.
Meaning: be part of something bigger.
It is definitely a cut-out-and-paste reminder to put on the fridge door.
For more information pay a visit to actionforhappiness.org.
Reading this somehow made me feel good today. It has been a wet and windy day here in Exmouth and so overcast that we have needed to keep the lights on most of the day. It is also the anniversary of my elder brother's death from adenocarcinoma 18 years ago but it still feels like yesterday. He died very quickly, about three weeks after diagnosis. We were all in shock. Strangely, a cousin of mine died on the same day, four years ago. He literally dropped dead while playing football, of an aortic aneurysm. It was the same day that he had been diagnosed with prostate cancer. I have been doing a lot of thinking today about life.
All that made me feel sad but I felt happy to learn from my friend that she seems to be doing alright with her cancer treatment and is suffering mainly from fatigue.
I was also browsing through some of the threads and came across a fellow Brit, Karen3, who had recently posted and who used to post on here. I felt glad to know that all was going well with her.
I have just read an excellent book by Peter Ackroyd, a renowned writer here in the UK, a novel entitled Three Brothers. I found it very profound and interesting and it somehow seemed written for me. I would highly recommend it, especially if you like a truly intricate and involved plot.
That is all for this evening. Have a good week everyone and remember Sandra, who will have her first chemotherapy on Wednesday.
Sylvia0 -
Go Sandra! Kick stoopid cancer to the curb! All the best for Wednesday. You'll get it done!0
