Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia,
Sorry for not posting. We have been very busy here.
We went to Butlins and it was great so great infact we are going back in just over a weeks time.
Liz's pain in her ribs comes and goes it does seem to be when she lifts something so we are not to worried about it. She also has a pain inside her shoulderblade. she had this 3 months ago and was fully checked out by the surgeon and said it was nothing to worry about.
We have sold the motorhome we bought last year to travel in as we do not think we will use it so much this year. There are lots of very cheap holidays outside of school holidays. The motorhome has been replaced with a new car for Liz so she is happy driving around in it.
Liz asked the hospital 8 weeks ago if she could have her ovaries removed. They said yes but she has heard nothing more so we need to chase that up as she is a bit panicky about getting ovarian cancer.
Liz also has a good friend that is going through various internal cancers (not sure what), she is grade 3, stage 3c. She has had various operations about 18 months ago and Chemotherapy afterwards. She now has some pains again in her stomach so has to take a blood test on Thursday to see if it has come back.
We have downloaded series 2 and 3 of The big C. Its an American comedy about a woman diagnosed with cancer. We watched the first series just before Liz was diagnosed but never watched the other series. She dies in series 4.
Peter
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I am rarely on this forum, and always on Flat & Fabulous on Facebook - - had to share the news:
6 month post-chemo completion and CT test result appt was this morning - - CT is completely CLEAN, blood work including "cancer marker" are "WONDERFUL" - - happy happy dancing here today . . . "God isn't finished with me, yet." ! ! !0 -
Hello Peterand Liz , and Fern MF,
It was nice to hear from youand I shall reply tomorrow when I have more time.
Thinking of you,
Sylvia.
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Hi FernMf,
I am so happy for you, what great results .
Have a wonderful weekend.
We were in West Virginia last september and it must be fabulous this time of year too.
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Hi Sylvia
I had treatment 5 on Monday and I am feeling fairly tired as the steroids are keeping me awake. The weather is most enjoyable though.
I have a lot of research to post to the website and I will try and do that this evening. I see from the news today that 47% of us will get cancer by 2020. That is quite shocking. I think that for people of my late mother's generation that would be incomprehensible.
I hope the weather is nice in Exmouth. I see poor Dresden was swamped yesterday. I was there last year, it is a beautiful city.
Michael
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Hello peterandliz,
Thank you for your post.
I was glad to know that you had a great time in Butlins, and so much so that you are going back there shortly. We all need to learn to enjoy life as much as we can because life is so short.
I was sorry to know that Liz has some pain, especially when she lifts anything, and although it is hopefully nothing serious, I would still get it checked out. It is not normal to have unexplained pain.
I do hope you have some nice holidays this year without the motorhome.
I can understand that you need to chase up the hospital. If Liz is certain that she wants to get her ovaries removed, it is probably best to get it done out of the way. There is nothing worse than waiting. Do you think that a lot of women will be getting both breasts removed as well as their ovaries, in an attempt to prevent cancer?
I was sorry to hear about Liz's good friend who seems to be having a bad time. I do hope she will get a good result from the blood test that she has to have on Thursday. Let us know how she gets on.
I have heard about The Big C comedy but I have not seen it.
This morning I was listening to BBC Radio 4 and there was a discussion with two cancer specialists. One was Professor Karol Sikora, who is very well known, and the other was Professor James, of whom I had never heard. I did not think it was good news to hear that by 2020 one in two people in the UK will be diagnosed with cancer.
Best wishes.
Sylvia
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Hello FernMF
Thank you for your post. It was good to hear from you and to share all your good news. I am very glad that six moths post-treatment you are in the clear and I know how happy you must be. I have missed you on this thread and I hope you will try to post and give support where needed. bc.or is a very good and serious forum and one on which I think we can all feel safe. I have never posted anywhere else and have tried to make this thread as useful and informative as possible.
I do not use Facebook. What exactly goes on with Flat and Fabulous and what else is there on Facebook that pertains to breast cancer and TNBC in particular? I know that Facebook is a way of life for a lot of people, as well as Twitter.
Thinking of you.
Sylvia xxxx
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Hello linali (Lindsay),
It was nice to see you on the thread. It was great news for FernMF after six months.
How are things with you?
Do you ever hear from Mumtobe (Carol) or BernieEllen?
Best wishes.
Sylvia xxxx
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Hello Michael,
Thank you for popping in. I expect you are glad that treatment 5 is over. I can understand how you are feeling tired from lack of sleep due to steroids. How long does the inability to sleep last?
I was interested to know that you have a lot of research to post on the website and I shall have a look at it tomorrow to see if you managed to post it this evening.
I was also picking up on news about cancer this morning. As I told Peter, I was listening to Radio 4 and John Humphries was interviewing two cancer specialists, Professor Karol Sikora and Professor James. They were talking about one in two people getting cancer and I thought that was pretty dire news and delivered in a somewhat relaxed way. With all that is going on and with all the treatment, things are only getting worse. It is not very encouraging. I think that you are right in saying that our parents generation would find these statistics incomprehensible.
I was also surprised to hear it stated that breast cancer in younger women under fifty is still rare. That is not the impression I get from these threads, especially with breast cancer with triple negative receptors. It was stated that the average of a cancer patient is 68 and that two million people today in the UK have or have had cancer.
Naturally the problem of how the NHS will cope with all these people getting cancer came up. The answer seemed to be that fewer people will need to be in hospital and the workload will be shared out between the hospital, the GP and palliative care such as McMillan. I am not sure that I share this view and I fear that care may not be what it should be.
There was also talk of cancer drugs and how expensive they are. The answer seemed to be that the drugs are expensive only when they are on patent and that they come off patent after ten years and become cheap. I wonder if this is true? I do not think they should be on patent in the first place and that the patents should belong to society and there to serve society. A profit motive with drugs seems to me to be unethical. Do drugs really come off patent after ten years?
There was further discussion about drugs being better at keeping patients well and out of hospital. They discussed how treatment would become more and more tailored with complete gene analysis.
I got the feeling there was not much about prevention, which is what I believe is the path to go down, but there is no profit in it!!! I think it is common sense to have good nutrition, avoid getting overweight, have some exercise and keep as many chemicals at bay as you can, and of course do not smoke and drink in moderation.
I was glad to know you are getting good weather. I do tend to listen quite carefully to the weather forecast these days and then I know how people on the thread are fairing. It is fairly mild in Exmouth today, but the sun is not as strong as it was yesterday. We are supposed to have isolated thunder showers later today in Devon. These usually miss Exmouth. We could do with a lot of rain overnight to help the gardens.
I am hoping to catch up on some reading during the weekend, books, magazines and newspapers.
Have a good weekend and keep in touch.
Sylvia.
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Hello sam52,
I was wondering how you and yours are. How is the garden going? Have you any plans for the long summer holidays, which are not that far away?
Love.
Sylvia xxxx
Hello Lolalee,
I was wondering how you are getting on and whether you have any news of Liv?
To everyone,
Have a good weekend and to anyone newly diagnosed, please do not go through your breast cancer journey alone.
Sylvia
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Hello Sylvia
Thank you for your post(s)....
I am still driving up and down to the Cotswolds every weekend (2.5 hour drive),where my father is in hospital. There have been a lot of problems and it is all taking its toll on me.I am really exhausted.I will be going there this Sunday and on Monday attending a case conference at the hospital.
Apart from that I have been working hard on the allotment and a bit in the garden - mostly pruning and cutting hedges.( That was how I spent my half-term holiday).
Now I am in the middle of writing reports for school.
I had a consultation with my rheumatologist last week; he told me my vitamin D levels were 'good' and my calcium a bit high....but that all the calcium results are coming back high as the hospital has changed the way they assay them????? so not to be concerned. He was most put out when I asked him for exact numbers and in the end just printed out the whole lot.
So I have these results:
PTH 4.8
vit D 110 nmol/L
calcium 2.60mmol/L
I would be interested in your opinion.How do these compare with your levels? He also said that he would not recommend supplementing with calcium; and that strontium ranalate is about to be withdrawn.When I mentioned strontium citrate, he said he would not recommend anything with strontium - however, he would not explain why.He is going to ask for another DEXA scan in a year's time and we will discuss possible treatments for the osteoporosis then.I am still very confused and unsure how to proceed.
I don't have any plans for the Summer holidays; I expect I will spending a lot of time with my father and tending the allotment.I hope to be able to visit friends and try to get some relaxation time!
With love,
Sam
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Hello sam52,
Thank you for your post. It was so nice to hear from you.
I was sorry to hear that your father is in hospital and I can understand how exhausting it must be doing that long drive from London to the Cotswolds. I know what it is like dealing with problems with hospitals, social services etc., as I went through it with my mother and I have seen it, experienced it in the apartment complex where I live. It must be so difficult for you doing all this in addition to trying to run your own life and holding down a job. Please take care as stress and exhaustion are not good for anyone and least of all those of us who have been through cancer treatment.
I know that gardening work is very tiring as well but at least it gets you out in the open. I have been doing a lot here in the grounds and I find that I get really sore feet and I do worry about my back.
You must be looking forward to the long summer break.
I was very interested to know about your consultation with your rheumatologist and would be interested to know how you got a consultation. Were you referred to one by your GP? My breast cancer consultant/endocrinologist was dealing with my osteoporosis, but I have now been discharged from her for my breast cancer and my now cured hyperparathyroidism, so I feel somewhat in limbo. My oncologist just asked whether I was still taking the calcium etc. when I saw her in May. It was my GP who called me in to discuss my latest DEXA scan results. She did not seem that interested. Do you think I should be seeing a rheumatologist?
It is good to know that all is fine with your vitamin D, as that is very important. I find it a bit odd to say the least that the hospital has changed the way they assay calcium levels and that the result is that these calcium levels are now coming back high. That does not make any sense to me. Surely patients are going to be concerned if they are told their calcium levels are high, even if they are told not to worry. In February when I had a routine blood test, my calcium level was 2.04. (In my notes I have the normal range level for calcium is 2.05 to 2.55). The normal range for PTH that I have in my notes is 1.2 to 7.6. I do not know what mine is because, although I specifically asked for it to be done, it was not done and I decided not to bother. I have not had my vitamin D level done in a while, but last time I had it done it was about 95 and I received a letter of congratulations.
I was interested to know that your rheumatologist said he would not recommend supplementing with calcium. Have you stopped taking all calcium supplements now? I get so confused about this. My oncologist told me to continue taking my calcium supplements. I asked my GP about calcium supplements and I expressed my concern about what I had read concerning calcium supplements and heart disease. She replied that she was not concerned about my taking calcium supplements because I did not have any heart problems. I was puzzled by her reply because to myself I thought that I may not have heart problems now but will the supplements cause them? To tell you the truth I sometimes get fed up with the medical profession as it seems to be full of contradictions and just concerned with dishing out pills. There does not seem to be a consensus with doctors over medication.
I was interested to know that your rheumatologist had said that he would not recommend anything with strontium. My GP suggested that I might want to research strontium since I would not take bisphosphonates. When I did research it I found out it was strontium ranelate and was being prescribed as an alternative to bisphosphonates, but that it was just as lethal. I researched strontium citrate, bought some and have been taking it but have not consulted the GP or anyone else about it. I did mention it to the oncologist but I do not really know if she picked up on it. I think that in the end a patient can only make up their own minds what to do. My GP does not think I shall be able to get another DEXA scan so I do not know whether the strontium citrate is doing anything for me or not. I really feel that I am not being taken care of as far as my osteoporosis goes. I do know that denosumab, a monoclonal antibody, is being used for osteoporosis as well as breast cancer that has gone to the bone, but I shall not be taking that.
It seems to me that probably the best and safest thing to do for osteoporosis is to get it from your diet, but not from dairy products, and to walk and keep active. Osteoporosis also seems to be part of the ageing process.
I can understand your confusion about all this and in the medical profession it always seems to be about procrastinating and waiting. As far as I know, standard medical practice for osteoporosis seems to be calcium supplements, now the added vitamin D, bisphosphonates, oral or IV, strontium ranelate and denusumab.
Please keep in touch and let us share any information that we come across. Lately I seem to worry more about this osteoporosis than I do about the breast cancer coming back.
By the way, my oncologist said that my cancer treatment was not responsible for the osteoporosis, but I keep reading that chemotherapy does cause osteoporosis!!! What with that and the hyperparathyroidism it is a double dose.
Keep in touch.
Love.
Sylvia xxxx
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Hello sam52 again,
You know me well enough to know that I would be trying to research why your rheumatologist was against strontium. I have just been reading a link about strontium citrate, where it states that it is highly beneficial for osteoporosis and does improve your bones. I think, probably, the main reason this natural product does not meet the approval of the medics is that it is not a patented drug like strontium ranelate and the bisphosphonates. Have a look at the following link and let me know what you think.
http://www.terrytalksnutrition.com/just-ask-terry/2011/10-07/strontium-and-osteoporosis/
I have just read on another thread that a woman with TNBC in the right breast had a new TNBC in the left breast thirteen years after being in the clear. That is not very encouraging.
Take care.
Love.
Sylvia xxxx
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Hello sam52 yet again,
I started reading the contents of the link that I gave you and it seems to indicate that the natural strontium I am taking is one of the best things to get strong bones. I went to his other website www.terrytalksnutrition.com and found a long list of supplement combinations that he thinks are good for various conditions. I was especially interested Supplement #58 Osteoporosis and Bone Health formulas. Here is that supplement number.
Supplement #58, Osteoporosis and bone health formula
Vitamin D3, 4000 IUs; vitamin K1, 300 mcg; calcium, 450 mg; magnesium, 200 mg; zinc, 20 mg; copper, 2 mg; manganese, 2 mg; vitamin K2, 45 mcg; Lactobacillus Sporogenes, 1 billion, silicon, 50 mg. Take this formula two to four times daily.
This formula is primarily designed to support healthy bones and reduce the risk of osteoporosis. For additional benefits strontium and biologically active silica from horsetail can also be used to support bone health. Researchers believe that this kind of formulation can also reduce the risk of heart attack by as much as 50%; reduce the risk of common cancers of the colon, prostate and breast by as much as 50%; reduce the risk of infectious diseases including influenza by as much as 90%; reduce the risk of type 1 diabetes and type 2 diabetes by 78%; decrease the risk of dementia and depression, and wipe out most cases of fibromyalgia, and decrease the risk of Parkinson’s disease and multiple sclerosis. This formula has also been shown to lower PSA scores related to prostate disorders. Due to the excellent combination of ingredients this formula not only reduces the risk of osteoporosis and supports bone health but can reduce the risk of many health conditions.
You might be interested to know that silica is the number one mineral advised for bone health in other countries and not calcium.
Both of the links that I have posted have interesting information.
Love.
Sylvia xxxx
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Sylvia, hi!
In thinking about your last post, I am struck by a couple of things--Jonas Salk never took out a patent on the polio vaccine--he said it would be like trying to patent nature.
My treatment used very old chemo drugs but was still expensive for my insurance, I wonder why? Big Pharmacy is creative when it comes to extending patents. Change a molecule here and there and you can have a "new product."
I too think that compared to treatment, prevention is what we should be focusing on. We keep looking at the tree of cancer and ignoring the soil it grows in. This isn't as true for recurrences in tnbc where we are lucky in some weird way because without tamoxifen et al. We are left with tending the soil of our bodies to potentially prevent recurrences. But most of this we learn from breastcancer.org as oncologists in US are not very educated in this regard (e.g., in nutrition and exercise).
Shopping for organic produce, at least in the US, is soooo expensive, I wonder how people who are not middle class can afford this option. When we retire next year to North Carolina, I plan to plant an organic vegetable garden as our income will be much reduced.
Also, it takes time to avoid fast food, even higher quality, in favor of home cooked meals. People who have to work more than one job, how can they have time to home cook healthy meals? I'm thinking about the book published years ago by a journalist who tried to live for a year working minimum wage jobs and how eye opening that was. Money is involved so much in health and illness.
I'm rambling so I'll stop.
May everyone have a nice weekend.
Peggy0 -
Hello PeggySull,
Thank you for your most interesting post. Thank goodness for people like Jonas Salk. I do agree with you about Big Pharmacy and being 'creative'. I think it is awful that everything in our society is based on greed and profit and not in the service of what is good and beneficial for society. All too often profit comes first.
We are definitely in tune with each other about prevention rather than this constant emphasis on expensive drugs that are very harmful but keep us ticking over, even if there is reduced quality of life. I have always said on this thread that I am glad I am not taking any prescribed drugs to try to prevent recurrence or spread. I feel better trying to live a healthy lifestyle, good nutrition, keeping active and giving my immune system a chance to fight and recover from chemotherapy, surgery and radiotherapy, all of which are pretty lethal.
I do agree that organic produce is very expensive. It is the same here in the UK and I sometimes wonder whether the stuff is really organic. There have been so many scandals and revelations about the food industry in general that I do not think we can really know what is in our food. We have had scandals about horse meat being passed off as beef in many products. It would be so easy to pass off food as organic when it is not. Again, it is greed and profit that counts and not the well being of customers.
At least when you retire to North Carolina and grow your own vegetables you will know what you are eating. You must be looking forward to that.
My husband and I tend to eat very simply and avoid convenience foods. We tend to stick to a little fish, such as wild salmon or some haddock, which we poach and have with a lot of fresh vegetables, which are a mixture of organic or ordinary. We have lots of fruit and raw nuts.
The latest news about food here is that in meals such as fish and chips the fish being used does not have to be specified and cod and chips is often not cod at all, but a cheaper fish, such as a fish from Vietnam. We were watching a programme on television about Rogue Food and part of it was about a man who had had fish and chips and nearly died. The fish he had eaten was this Vietnamese fish and he had a serious allergy to it.
That is about all for today. Sending you my best wishes.
Sylvia xxxx
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Thanks all.
Sylvia: facebook "Flat and Fabulous" has many ladies in a "private group" ranging from militantly flat and proud of it, to the struggling, uncomfortable, reconstructed failures, all stages of BC, "uni-boobs", etc. It is easy to post there, picture posting is WAY easier than on this forum. Many ladies who are on facebook are also here, I believe.
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A couple months ago, I was having trouble with depression. I asked for medication. I rec'd effexor, and could not tolerate the side effect of double vision. I went to a counselor twice. I didn't believe that would be helpful. I decided to begin taking non-prescribed supplements and see what happened (what could it hurt, right?). I can confirm that 2 months later, I am BETTER. Between a fierce dose of prayer and these medications, I believe I am BETTER than I've been in years, even with the last 14-month-BC-journey. Here's the list: B-12 1000 mcg D-3 1000 IU Green Tea 1000 mg Melatonin 300 mcg St. John’s Wort 300 mg S-adenosylmethionine (SAMe) 200 mg
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Hello FernMF
Thank you for that most informative post. I shall be answering later on when I have finished my chores.
I have read in the past that better survival rates for breast cancer might be due to the fact that a lot of people are now adding alternative and complementary treatments to the standard orthodox treatment.
Those who have been following this thread since inception will know that includes me.
I shall talk to you later.
Very best wishes.
Sylvia xxxx
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Hi Sylvia,
I did here on the news that 1 in 2 people will get some form of Cancer by 2020. I think it is mainly to do with us living longer the same as many other age related illness's. I guess a percentage is our lifestyle as well and better diagnosis. I do not think it has jumped from 1 in 3, to 1 in 2 in the last year or so.
I think we here a lot more about breast cancer now as its not a taboo subject any more. Liz's mum died of breast cancer in 1985 mainly because she did not want to go to a male doctor and show her breasts. When she finally went it was to late.
The internet has changed things. We found all our information from the internet. I guess 20 years ago you were given a booklet from the doctors with the basics in and nothing else.
I also think the internet is the reason we are hearing more about young women getting cancer. They will post and talk more openly. A cancer related news bulleten will always grab the headlines more if its about a young person. The official figures still show mainly older women are getting breast cancer.
Facebook! I think it is one of the best things to come out of the internet. Liz has become friends with many of her old school friends and work friends. She chat to some of them every day. Liz is also on a closed group with other people she went through Chemo with. The group started on a similar website to this but was not easy to use and very basic, like this website. They decided to have a Facebook group instead. It is so much more interactive. Everyone are friends they organise trips out a couple of times a year celebrating getting over the chemo etc. About 15 of them on the group are off to Birmingham later this year for a couple of nights.
Liz and I went on a 6 mile bike ride yesterday the first time Liz has been on a bike for 2 years. She is in a lot of pain today. Her hip, hand and knee joints are aching. She said she has not felt this bad in the last year. But she enjoyed it and cannot wait to go out again.
Even though the weather has not been very warm this past week it is lovely to see everywhere green and coming out in flower.
Peter
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Hello FernMF,
Thank you again for your information about Facebook and the private group you are in. I suppose that in the end we all have to choose the forums, threads and groups with which we are comfortable.
I found bc.org quite by chance in 2009, five years after my breast cancer diagnosis and in fact I started posting about hyperparathyroidism and a connection with breast cancer. That was on the high calcium thread. I then looked at Calling all TNS and posted there but found it too big a thread for me. I noticed there were hardly any Brits posting there, if any, and I decided to start my own thread mainly for Brits because I thought TNBC was in the dark ages over here. I have worked very hard to make the thread meaningful, informative, friendly and supportive and I have had wonderful women posting on here as they have gone through treatment in friendly groups. I like bc.org because it is a breast cancer charity, the founder is a doctor, and we have moderators to keep an eye on everything and to come to the fore if we have trolls or unacceptable behaviour and language. I do not know where this thread will go in the future.
I know that Facebook is a way of life for a lot of people, but it is not for me. Again, I find it overwhelming. I was invited by someone on the thread to join a 'private group' on Facebook, but I decided against.
I was interested to know that you found posting pictures on bc.org difficult. If you have a problem such as that, I would think it would be a good idea to bring it up with the moderators, as I am sure they are always looking for ways to improve the forum.
Do you spend a lot of time on Facebook? I do not like to spend a lot of time on the computer. I find that keeping the thread going in a meaningful way and fulfilling my onerous duties as a volunteer director takes up a lot of my time and I am always trying to find time to read, relax and keep the home in order.
I was glad to know that you are feeling so much better after having trouble with depression. Doctors will always come up with a pill for all ailments but they all have side effects. I do not take any medication from my doctor, as I think it will always do more harm than good.
I was interested in your list of non-prescribed medication or supplements.
I do take a B complex vitamin most days, as well as vitamin D3 1900 IU every day. I have been drinking decaffeinated green tea for eight years but do not take it in supplement form. Melatonin is not available in the UK but I have heard good things about it. I have read a lot about a possible connection between too much light at night when melatonin is formed, and the development of breast cancer. I try to keep the bedroom as dark as possible. What made you decide to take melatonin? Is there any specific reason why you are taking St John's Wort? I must admit I have never heard of S-adenosylmethionine (SAMe). I would love it if you could tell me what it is for. I also take calcium, magnesium and vitamin K supplements for my osteoporosis and am self-prescribing strontium citrate for the osteoporosis. I bought it online.
I do hope you will stay with this thread as well as your Facebook group.
If there is anyone in your private group that has been through this thread, please say 'hello' to them and give them my very best wishes.
Hoping to hear from you and wishing you all the best.
Sylvia xxxx
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Hello peterandliz,
Thank you for your interesting post. I also heard about the news that 1 in 2 people will get some form of cancer by 2020 and I listened on Radio 4 to the interview with two oncologists and their comments about it. I wrote about this in a previous post.
I do agree to a certain extent that we are having more cancers due to people living longer, but the fact is that a lot of people are developing cancer at a younger age and I tend to think a lot of it is to do with lifestyle, eating too much junk food and not getting sufficient exercise, not to mention the environment. If you mistreat your car, it does not function properly and we have to learn not to mistreat our bodies if we want them to function properly. I also think stress and a hurried lifestyle of pressure affects our hormones and the proper functioning of the body. It could be too many scans are being performed and exposing people to too much radiation. I wonder what the excessive use of mobile phones is going to do. My breast cancer consultant told me she thought it would end in an epidemic of brain cancers. The younger people are continually hooked up to something and spend a lot of time playing computer games etc. instead of getting outside and exercising.
I do agree that breast cancer and cancer in general is now not a taboo subject.
I was sorry to hear that Liz's mum had died of breast cancer in 1985, because she delayed going to see a male doctor. How old was she when she died? I can identify with her in that I do not think I would have felt at ease going through my cancer journey with males looking after me. I did delay when I found a lump and when I decided to see a GP I booked an appointment with a female doctor. I was very lucky that I had an all female team looking after me from diagnosis to end of treatment. I had a female breast cancer consultant/surgeon, a female oncologist, a female cancer nurse and mostly females dealing with my chemotherapy and radiotherapy. All of that was quite by chance.
I do agree that the internet has changed things. When I was diagnosed I did not use the internet. What I did was read my way through book after book and was always informed at my appointments. The first book I read was The Cancer Directory by Dr Rosy Daniel and that equipped me to go to the hospital with my list of questions. In 2005 the consultant was surprised at all my questions and said it was most unusual and that most of her patients asked nothing and just wanted treatment. I think, or I hope, that this not wanting to know has now changed here in the UK, because of the internet, but sometimes I wonder. I spoke to someone recently who has gone through all her treatment, but did not know what kind of breast cancer she had or all the receptors. I found that amazing.
I get the impression that there are still a lot of younger women getting breast cancer, especially breast cancers of all kinds but with negative receptors.
I was interested in your comments about Facebook. Do you use it as well? How many private or closed groups connected with breast cancer are there on Facebook? Are they backed by anything, like bc.org, and are there rules about procedure or is it a free for all? I would be concerned about possible misinformation. We have to remember that we are not medical people and cannot dish out advice. On bc.org we are supposed to be informing and supporting and relating our experiences during our cancer journeys. Obviously we can talk about our lives apart from cancer but this forum is not really a social networking one. There used to be the website Friends Reunited that brought a lot of people together, but it was bought up and then went downhill.
I was sorry to hear that Liz is experiencing pain and not feeling good. I can imagine that her six mile bike ride has contributed to the pain.
I saw on the weather forecast that your side of the country has been quite cool lately. Here in Exmouth, the weather has been changeable and is decidedly cool today.
Wishing you both well.
Sylvia.
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Hi Sylvia,
It is a bit cloady here at the moment but about 19 degree's so nice and warm.
Yes Liz has Facebook on her laptop all the time so when ever we sit down or watch tv etc she often comments on it and chats to her friends. I would guess there are thousands of closed groups on Facebook relating to cancer. The one Liz is on only has about 60 members all of which were on "Starting chemo in October 2011" a group on one of the other cancer websites I think breast cancer care. anything specificly posted to the group can only be seen by the group but many comments are posted through normal Facebook as they have all become friends. It does make it a lot harder though when people die as you have got to know them. 2 people have died in the last year on Liz's group. I find it keeps it real so Liz and I do not fall back into lazy ways doing nothing. Life is to short to just let it pass by.
Facebook has become a way of life for many people, you can keep up with everyone when you are out on most phones now as well. Liz often checks Facebook 2 or 3 times if we go out for the day.
Liz and I are always amazed at how many people know they have breast cancer but know nothing about what type, stage or grade. no idea how people can live life like that without knowing whats going to happen to them.
Peter
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Hello peterandliz,
Thank you for your post. It was interesting to read what you said about Liz and her laptop, and chatting to her friends. It is definitely a different way of life now to the one in which Raymond and I were born and grew up. As children we were in households with no telephones and we met up with friends for chats. Now we talk to a friend in Canada via Skype and yet somehow it does not seem real to me. I still use the phone quite a bit to keep in touch. I used to be a really great letter writer but now I do not write letters at all, except business ones. When out I have noticed people walking along completely engrossed with texting or looking at their phone's screen. In cafés they sit in silence engrossed in their laptops or tablets.
I was interested to know that you think there are thousands of closed groups on Facebook relating to cancer. I suppose that we each have to do that which makes us feel the most comfortable. It is always sad on these cancer support groups when people die. Even on breastcancer.org you get upset because you do feel as if you have got to know people. There have been deaths on this thread and I have felt very upset. There have been others who post and you take in the heartache of them becoming more and more ill and then they disappear from the thread and you feel the worst. This is especially so when they have posted PMs to you. In the past there were a couple of really nice and informed women, such as Josephine and TEK2009 who were very unwell and then disappeared. Others have died that also posted on the TNS and family and friends posted to let everyone know. Recently a very lively woman, Liv, in Australia, posted a lot and then disappeared. You grow fond of them and you want to know what happened.
On these threads you share the good news and the bad and I certainly agree that it makes you aware that you have to be vigilant all the time about what you are doing and that you cannot take anything for granted.
I certainly agree that Facebook has become a way of life for many people and I do know of people who use it just to check up on other people. You can end up being 'friends' with loads of people as you get joined up to others and their friends.
I was glad to know that you and Liz are amazed at how many people with breast cancer do not know the details of their disease. I have posted many times, for the benefit of newly diagnosed patients, that the least they should know is what kind of breast cancer they have, the size of their tumour and thus stage and grade and of course their receptor status, ER+, PR+, HER2+, or whether these are negative or a mixture. That is a minimum that you need to know along with whether nodes have been affected. You can then take it from there.
I feel glad that you have come on the thread and discussed Facebook, because from this thread I had the impression that Brits were not that good at posting and expressing their feelings, certainly not as openly as the American women do. Perhaps I am wrong and they are all posting on Facebook.
I did pick up from that interview with the two oncologists on the radio that people were not as afraid of the word cancer as they were in the past, when they were not even told they had cancer, but they were now afraid of the word death as in our society death is still a bit taboo.
What do you think about all the media coverage this week about mammograms and the pros and cons? These are the kind of discussions that I would like to have ongoing on the thread, but all is very quiet on the thread at the moment. A lot of women have been on the thread since I began it nearly three years ago, and I and others have supported them through treatment. At the moment there are not many newly diagnosed posting and I hope that is because fewer are being diagnosed but that is not the impression I get from reading. Perhaps they are all on Facebook.
Do you have any new information about TNBC?
Wishing you and Liz all the best.
Sylvia.
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Hello everyone,
I thought you might be interested to know that a lot of the papers in the UK these past few days have had articles about mammograms and they have been saying that mammograms do not cut death rates. The links to these articles are as follows:
http://www.nhs.uk/news/2013/06June/Pages/Breast-cancer-screening-may-not-reduce-deaths.aspx
We all know the risks of radiation exposure through mammograms but is this exposure worth it? Some think it is and some think it not.
Best wishes.
Sylvia
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Hi Sylvia,
I have not heard anything about mammograms. Its not something I would read about as Liz is passed that point. I am very blinkered in the way I look at things if it does not concern Liz then its not something I look into to much. We read every week of studies that show you have an x% increase of getting cancer if you do this, that or the other and certain things are bad for you. All these studies are ok but sometimes they even conflict each other. We all know some people that drink, eat badly and smoke all their lives but never get any major illnesses. Then there are people like Roy Castle, very fit that gets cancer and dies early from it.
I think instead of spending money on surveys they should spend it all on trying to find a cure. There have been enough surveys done over the past 30 years to know there will be no major breakthrough from a survey or study.
Liz's friend has got her blood test back and it has risen to 35 it was up to 112 before chemo and her operations. It went down to 12 after all the treatment a year ago. 30 is the cut off point so 35 is not good. she and her children are coming to Butlins with us next week and she will do nothing until after the holiday. she has had a lot of her insides removed but I am not sure exactly what she has had.
I have emailed a couple of friends who live out in Spain only to find the husband has got Brain cancer which is terminal.
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Sylvia and Friends,
Hi - so, I need your all's expertise. What does this mean? I came across this article and I wonder if I'm confusing tumor markers (tumor burden) with circulating tumor cells (lvi invasion). Do you have any opinions to share about this?
What do you all make about this article? It was a surprise to me. I didn't know that circulating tumor cells can be at 0.
This article references a study where 299 people had a 0 for circulating tumor cells. I've never heard anyone post on the boards with a 0, or even with a 1 or even a 2? What do you all think, is he talking about a circulating tumor cell, which is what the Tumor Marker tests identify, circulating cells? I thought everybody carried some cancer cells. How do you get to 0? I did not know we were supposed to be at 0. Are we supposed to be at 0, or is he talking about a different cell?
UPDATE:
Now I've tried to read more on the internet about what defines an actual circulating tumor cell. They identify it as one that has shed off the primary tumor, which I think would be one that they identify and then would call lymphatic vascular invasion. Is that what you all understand this to maybe mean?
I think circulating tumor cell must be a different thing than a tumor cell burden, which is what is identified in tumor marker tests.
I think tumor marker and circulating tumor cells must be 2 distinctively different things, here is another article about CTC (circulating tumor cells)
http://www.investor.jnj.com/releasedetail.cfm?releaseid=754133
Thanks for your thoughts and opinions!
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PS - Sylvia, 95 on your Vitamin D level, wow! That is calls for congratulations. I must know what brand you are taking, and how many i.u. a day?
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Thanks Sylvia: I am on facebook PRIMARILY because I can connect with my family, all of whom are at least 1 hour drive away from me - most of whom are "too busy" in their lives to connect with me. I choose to be on facebook so that I can "at least" see what my adult children are filling their days with, and for the pictures I see of grandchildren who we don't see nearly as frequently as we wish. I worry about the internet in general, because I believe whatever is posted "could" be accessed by a savy technician. I am very careful about posting private information, etc.
The supplements I take for depression were listed in one (of thousands) of internet sites found after searching "natural anti-depressants" . . . I frankly do not take the time to investigate the supplements themselves - I purchased them because their prices were low, and available. I took them to see if there was improvement without side effects. I listed them at my latest oncology visit, and will do the same for my upcoming cardiology and gynecology appointments. If those doctors don't red flag them, then, I'm good to go, in my opinion.
Thanks for all you hard work and steadfast assistance to all of us, Sylvia. I appreciated it greatly last year when I began this journey.
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Hello peterandliz,
Thank you for your post. I can understand that you tend to look at things that affect Liz in particular more than breast cancer in general. There is only so much information that the mind can take in usefully, otherwise information can become a bit of a jumble.
It is true about all these percentages that are bandied about and all the information about what is good for you and what is bad for you and how a lot of it is contradictory. In the end, you have to make up your own mind about all this and do what you think is best for you and then keep your fingers crossed.
It is absolutely true that some people can do everything that is supposed to be wrong and live to a ripe old age, immune to all the illnesses that are out there. I tend to think that everything is the luck of the draw. Alcohol kills some people and seems not to have any effect on others. As for smokers, they are probably killing off more non-smokers from side stream smoke than they are killing themselves. That was probably the case with Roy Castle who worked in smoke filled clubs all his life. I find that I am very sensitive to smoke and try to steer clear of smokers.
Like you, I think all money needs to be spent on research for prevention and cures. I do not think there will ever be a magic bullet as I think cancer is multi-causal.
I was most interested in what you had to say about Liz's friend and her blood test. I was interested because during my treatment no one ever mentioned numbers and cancer markers. I remember my first consultation with my breast cancer surgeon. She examined my right breast and under the arms and said she was sure I had breast cancer, but now had to prove it. She then did a fine needle aspiration to take cells from the tumour. I saw her the next day, had a mammogram and an ultrasound and was told later that day that I did have breast cancer. There was no mention of tumour markers and numbers, so it looks as though they are now giving all this information, but is it another source of worry and anxiety? The friend knows that it has risen to 35, but before her treatment it was 112 and then it went down to 12. according to what you say, the cut off point is 30, so 35 is not good.
You will no doubt have read the post from InspiredbyDolce (Debra) so I was wondering what you think about her questions and whether you have read the links she posted. The links are quite difficult to understand and are really meant for doctors.
Going back to Liz's friend, she must be going around with the number 35 in her mind and worrying, but what does that 35 really mean? When you say she had a blood test and it has risen to 35, what does the 35 mean? Are we talking about tumour markers and what do tumour markers mean? Are tumour markers the same as circulation cancer cells? I am quite confused about all these numbers. We are told we all have cancer cells circulating in our body all the time and that most of the time our immune system takes care of getting rid of them so they do not develop into tumours. This would make me think that you would never have a score of 0, yet the links from Debra would seem to say the opposite. Deep down, I am thinking do we need this information. What can we do to lower the number? What is the difference in the numbers? For example, what is the difference between 29 and 31? If it is 29 are you OK and if it is 31 are you doomed?
Although I believe that knowledge is power, I also wonder whether too much knowledge can be harmful. If you think of a newly diagnosed person, in shock and frightened, how much does that person need to know and how much can they deal with at that particular point in time.
I was sorry to hear about the husband who has got terminal brain cancer. Can they give him any treatment? A friend of one of my cousins has recently died from brain cancer. He did have some surgery but he did not survive very long after diagnosis. One day he was taken in a hospice and died the next day. He was 62. This past week, I heard on the news about the writer Ian Banks, who at 59 has just died of cancer of the gall bladder. Apparently that kind of cancer is rare and difficult to treat. I also heard of the death of Rory Morrison, a broadcaster on Radio 4, who has died of a rare form of non-Hodgkins lymphoma at just 48. In the newspaper I read about two women who had been friends in the past and met up again by accident. One had breast cancer, the other had non-Hodgkins lymphoma and they supported each other through their journeys. One of them is now terminal. The point was that support like this from fellow cancer sufferers is very important, even if you are getting support from family and friends. No one can know better what you are going through than someone going through it as well or who has gone through it. That is the whole idea of this thread.
That is about all for today. I hope you, Liz, and Liz's friend and your children all have a good time at Butlins.
Best wishes.
Sylvia.
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