Calling all triple negative breast cancer patients in the UK
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Hello Sylvia,
I owe you a post rather than the other way around.
Like you and Raymond, our week has not gone at all smoothly. The monthly village carvery was held last Sunday. I don't usually go as I don't trust carveries, this time I did. Our caterers have a 5 star scores on the doors rating, even so, from the early hours of Monday morning light after light went on around the village as one after another of us went down with diarrhoea and stomach cramps, including us. Michael has reported it to the Environmental Health Officer. He's taking it very seriously as so many were affected. It seems that the gravy was the likely source. Everyone has now recovered and it's certainly bought the community together as it seems that everyone has their own little story to tell. The vegetarians win!
I read on the BBC site about doctors not referring women with secondary breast cancer quickly enough. Whilst this is shocking, one woman said that people do not realise that breast cancer can spread to other parts of the body without another cancer appearing in the breast and I think this is more shocking. Breast cancer awareness month is not achieving its objectives - this is very basic knowledge after all. I don't think many women on this site, if any, are so badly informed. Women must learn to advocate for themselves, doctors are not always right.
I too have noticed that people sometimes respond to posters years later, or post questions on threads that are very out of date. I wonder if cancer Facebook groups have taken some of the site's potential posters. The Metaplastic thread here is no longer used, probably because there are two active metaplastic, well advertised sites on Facebook. I dislike the whole concept of Facebook and won't join.
I hope you have a more peaceful week ahead of you.
Love,
Gill X
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Hi Mary,
I had to laugh when you said that you were having enough trouble dressing down, never mind dressing up. Hope your shoulder is fully restored well before the Christmas party season. I apologise without reservation for mentioning Christmas in October.
When it comes to cancer charities, I give to the Big C which is local to Norwich. It has a new centre at the hospital here and gives advice, help with form-filling and all the practical issues like exercise, wigs, cancer experience, coping with stress and so on. It's a safe place to have a coffee and a chat with people who understand what patients and their relatives are coping with. Being local means no plush offices or overpaid directors and managers to soak up the cash.
We are having a special Mass at the Cathedral on Sunday to celebrate the canonisation of Cardinal John Henry Newman. Prince Charles is going to Rome for the event which is, as the Queen is head of the Church of England, surprising. Although a few years ago Prince Charles did say that he would be 'defender of faiths', the 's' caused quite a stir and he hasn't mentioned it since. I'm not sure anyone would really care much nowadays.
I hope that the film you recommended will be out on dvd so that we can order it. We very rarely watch television these days
Take care.
Love,
Gill X
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Hi, I'm hospitalized since Thursday, platelets have been going down to 21300 and I hope to improve very soon. My mother was hospitalized again from Monday to Thursday. So we have not done anything just entering and leaving hhospitals
Abrazos
Marias
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Hi Marias,
Your platelets should begin to normalise very soon. I know It's difficult to get your mind in the right place when you find yourself back in hospital again. With your mother ill as well, the hospital does seem to be a large part of your life at the moment. Now that she has been discharged I hope her health will improve.
Love,
Gill X
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Hello Gill,
Thank you for your latest post. I was shocked to read what had happened at your monthly village carvery. I am glad that everyone has now recovered.
I read with interest what you said about breast cancer and that people do not realise that breast cancer can spread to other parts of the body without another cancer appearing in the breast. What do they think happens if you have had a mastectomy? I was told straight away by my oncologist that a rash appearing along the scar line of my mastectomy was one of the signs that cancer had come back and possibly spread. I think some people also believe that breast cancer that has spread to other parts of the body is not breast cancer. I have often wondered how an oncologist knows the difference when cancer cells are found in the liver, bones, brains or lungs, between spread from the breast or not. I suppose looking at receptors and comparing them with the original could be a way, but who knows?
I do agree with you that women have to be their own advocates and they must not be afraid to speak up.
With reference to the threads, it might be a good idea to get rid of those that are out of date and have not been used in a long time. I think the more compact threads are the better and that it is better to follow threads that deal with the whole journey and not have it in bits. The most important thing is to know from the outset what kind of cancer you have and then the hormonal status of tht cancer, and then the stage and grade. That is enough to digest when first diagnosed.
I do not like the concept of Facebook either and I shall certainly not join. I think it is good to be within an organisation that has moderators, otherwise there could be a lot of false information going around.
Do you ever read the weekly newspaper entitled the New European? I have been reading it for some months now and find it has a lot of quality articles. It is certainly much better than the daily newspapers.
The sun has just begun to appear here and that makes you feel much better.
Have a good week.
Love.
Sylvia xxxx
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Hola Marias,
I was very sorry to read that you have been back in the hospital since Thursday. What a bad time you are having. I do hope the platelets will get back to normal and that you will be able to go back home.
I was very sorry to read that your mother was in hospital again from Monday to Thursday.
All this must be a very complicated situation for both of you.
Is your sister from Bogotá staying with you? You both need someone to look after you.
I hope to hear from you soon and to learn that you are back home, that your mother is at home and not back in hospital, and that you are both doing well.
Are you able to get Talking Pictures? It has lots of old English films and the English is very well spoken and clear. I think you would enjoy these films. The English language today is a mess.
That is all for now.
Abrazos.
Sylvia xxxx
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Hola marias
Sentí mucho leer que has vuelto al hospital desde el jueves. Qué mal momento estás teniendo. Espero que las plaquetas vuelvan a la normalidad y que puedas volver a casa.
Sentí mucho leer que tu madre estaba en el hospital nuevamente de lunes a jueves.
Todo esto debe ser una situación muy complicada para los dos.
¿Tu hermana de Bogotá se queda contigo? Ambos necesitan que alguien los cuide.
Espero tener noticias suyas pronto y saber que está de vuelta en casa, que su madre está en casa y no en el hospital, y que ambos están bien.
¿Eres capaz de obtener Talking Pictures? Tiene muchas películas antiguas en inglés y el inglés está muy bien hablado y es claro. Creo que disfrutarías estas películas. El idioma inglés hoy es un desastre.
Eso es todo por ahora.
Abrazos
Sylvia xxxx
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Hello Sylvia,
I agree that some of the threads could be merged and the out of date threads removed. I do find it very frustrating when people don't include the details of their diagnosis and treatment and wish that this could be addressed. It's not as if anyone can be identified by these details.
Apart from during treatment, I haven't had to deal with pain in my joints or in my arms and legs. Over the last few days however, most of my joints have begun to ache and the pain down my left leg can be quite intense at times, especially at night. I wondered if this could be a side effect of chemotherapy - I know that SEs can appear long after treatment has finished. I went for a long walk along Southwold beach yesterday and the exercise hasn't made the discomfort any better or any worse.
An old friend of mine had a second triple negative cancer appear in her other breast. After much thought she decided not to undergo chemotherapy again. The side effects of the treatment she had less than two years ago were were difficult to cope with, particularly the neuropathy and memory problems. Her oncologist said that chemotherapy would only confer a 5% advantage. She was offered a lumpectomy followed by radiotherapy, but now regrets not asking for a double mastectomy. I have always felt safer with the mastectomy option, but was told by my breast surgeon that it made no difference to outcome. However, with only a small clear margin I do think that I may well have saved myself a second surgery. If I'd opted for lumpectomy and the margins had not been clear I would have gone back to the bottom of the list and a wait of 62 days. This isn't always made clear to breast cancer patients. I had prepared a list of questions and this was one of them.
I haven't subscribed to the New European yet, but Michael sometimes reads the French newspapers to me when there's something interesting or important. We subscribe to the Guardian but the political correctness is beginning to grate, so the New European could be an option. The local press is, as in most parts of the UK, hopeless. I can't help fearing for our education system when I look at the grammar and spelling of so many journalists. Truth and historical accuracy have long been abandoned.
After a warm and sunny day yesterday, today is dark and wet. Half term begins next week and parents will be wondering how to occupy their children if it's wet and miserable. I used to take mine on a fungi hunt, no sampling allowed, even when we found field mushrooms - just in case they weren't.
Hope the weather's more cheerful in Exmouth.
Love,
Gill X
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Hello Gill,
Thank you for your post. I do agree with all that you say about some of the problems on the forum, but I do not know if anything will change.
I was sorry to read that you are having problems with pain in most of your joints. We know there are all kinds of side effects with chemotherapy treatment so this could be the cause of your pains. Perhaps you should get the problem checked. It does sound rather like arthritis.
I sometimes wonder about chemotherapy treatment and how much good it is doing and whether we could have survived without it. With reference to your friend, a 5% advantage does not seem that great, considering the lethal effects the treatment causes. All we can do is make our decisions, hope for the best and not have any regrets. We cannot undo what we have done.
The decision whether to have a mastectomy, a bilateral mastectomy or a lumpectomy, is again one we have to make and have no regrets.
For me I was told I needed a mastectomy because of the large 6+cms tumour and that I needed the chemotherapy first of all to make the surgery easier. Even if I had had a choice I would have still opted for a mastectomy. I have always felt that surgery is the most important part of breast cancer treatment, and for me knowing that the whole breast had been removed, somehow gave me peace of mind. Like you, I have read that whether a patient has a mastectomy or a lumpectomy makes no difference, who knows? There is always the doubt with a lumpectomy about having got clear margins. I know from women around me here that with lumpectomies they could only have two attempts at clear margins and if this failed they were told they needed a mastectomy. I know that three women here all had lumpectomies and are still surviving after many years. Two of those had hormonal breast cancer but one probably had all negative hormone status and has now survived thirty years or more. She had a lumpectomy and some kind of radiotherapy and was in her late twenties.
I have stopped reading the Guardian because of political correctness and too establishment. I prefer the New European and the Morning Star. One is pro EU and the other is not, but they have quality articles and the English is much better than the tabloids or the broadsheets.
I share your views on the state of the English language. It has been so dumbed down along with everything else.
We have a bit of sunshine at the moment but we did have a downpour about half an hour ago.
Take care.
Love.
Sylvia xxxx
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Hi Sylvia and Gill
My concern after looking at these topic forums is that I did not receive carboplatin and it appears that many woman have received that as well. It was such a tough decision to make for a mastectomy or a lumpectomy. I was advised by one of my nurses to go with the lumpectomy and to not look back. Not looking back is a very hard thing to not do. But I think most days I'm ok with the decision.
I'm so amazed at politics these days, not just in the US but in the UK as well. Is it even possible for either system to work when politicians are just looking ahead to the next election and how to get re-elected? Our daughter studied in England and we visited her in 2009. We fell in love with the country and I can't wait to return. Hopefully ournext visit we can visit Cornwall primarily because of my love of the Masterpiece Theatre Poldark series. It just looks like a beautiful place and I want to see it.
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Hi pkville,
I think Carboplatin is mainly used to treat advanced breast cancer rather than medium stage like ours. AC+T is a strong treatment so I wouldn't worry - yes I know, worry is not optional with this disease! The point is that you have done all you can, looking back at the 'what ifs' just wastes our time and energy.
I agree with you about politics, the US and UK are a complete mess. Both our leaders have abandoned the concept of honesty in favour of clinging on to the top job at any price. In the UK most of us have deep concerns that Boris Johnson will sell off the NHS and our access to free healthcare.
Cornwall is beautiful with some dramatic scenery, avoid school holidays though. You might also enjoy Devon. Less drama but really good sandy beaches and rolling green hills. Sylvia will be able to tell you more about Devon. I used to live there, but moved over 30 years ago, so a bit out of touch.
It's good to know that you fell in love with our country. With everything that's going on here, most of us are feeling fairly low at the moment and could do with cheering up.
Take good care of yourself.
Gill xx
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Hello all - just got back from vacation in Italy - so grateful to be able to travel and we hiked the Cinque Terra - here is a couple of photos - Italy is a beautiful country and the people are very friendly. I really missed my everyday food - but I survived.
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Hello pkville,
It was nice to hear from you again.
There is no point in worrying about the fact that you did not have carboplatin. You have to trust that your oncologist treated you with the chemotherapy regime that he/she thought necessary. A lot of us had regimes when there was no carboplatin and we are all surviving. All of these chemotherapy drugs are toxic and the more that are added the worse we might feel. The time to question your oncologist about what other drugs there might be is when your treatment is being planned. The most common drugs for a long time have been doxorubicin (Adriamycin), epirubicin (Ellence), cyclophosphomide (Cytoxan), paclitaxel (Taxol), and docetaxel (Taxotere).
Keep looking forward and do not look back.
Just keep telling yourself that you are fine and do everything you can to keep healthy.
As for politics, I am disillusioned with politicians in general in this country. I think our system is archaic and we need urgent modernisation and people going into politics out of dedication to their country and not out of self interest.
I must admit I cannot see much of real democracy in either country. There is too much fixing of results.
I can understand why people can like this country as a visitor, but living here is very different. There is far too much poverty and inequality and the class system is horrible and a blatant denial of democracy.
I do hope you get to visit Cornwall. It is picturesque but it is not somewhere that I would like to live. It is too wild and isolated for me. Dramas such as Poldark and especially Downton Abbey romanticise too much. Everything was fine for the Lords of the Manor but not for ordinary people.
I do hope you will pop in from time to time and keep optimistic.
Love.
Sylvia xxxx
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Hello adagio,
Thank you for popping in to say hello and to post some photographs of your holiday in Italy.
I was glad to read that all is well.
Keep in touch.
Love.
Sylvia xxxx
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Hello Mary,
I am concerned that we have not heard from you in a while and I am posting to say that I hope nothing is amiss and that you are quietly making progress with your arm/shoulder problem. Please let us know that all is OK.
Hello Marias,
I am wondering whether all is progressing with you as well. I know that you were having problems with low white blood cell count and that you were in hospital. Please get in touch and let us know how you are. I do hope your mum is still making good progress.
Hello Kath,
I hope all is well with you too. How is your work and studying going?
Hello HelenLouise,
How is everything with you?
Love.
Sylvia xxxx
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hello Sylvia, Mary, Gill, Kath, Marias & all on this thread.
I love the photos Sylvia and to hear you had a nice vacation. I have been reading on occasion across the different discussions.
Now that I am back at work I am much busier and get quite tired at times. Enjoying the challenges my work brings, although the changes being made to the sector and our organization are not much to my liking. It’s spring and the weather on a sunny day is beautiful to be out and about. Garden is a pleasure and I am planting spring veg tomorrow.
My health is seemingly stable at the moment with my next MO visit in late November. I have only the occasional back and joint pain that is manageable and I am thankful to be off all medication. I am slowly adjusting to my body and trying not to think too much about cancer.
Hoping you are all well. Xxx
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Hello Sylvia,
I think lumpectomy may well be the best option in the majority of cases. Like you, I just wanted the whole breast gone once and for all. Mastectomy is now considered the safer choice for metaplastic breast cancers according to some studies but that's probably because metaplastic comes back so quickly and is most often chemotherapy refractory, either from the beginning of treatment or during treatment. I'm hoping that mine is the latter so that I've gained at least some benefit. Chemotherapy is rarely used to shrink tumours prior to surgery now because of its poor response which would waste time while the tumour carried on growing. My cancer was only 2.4 cms. The ultrasound scan had shown it to be 3.2 so I was surprised and very pleased that it turned out to be much smaller. Interestingly, my original breast surgeon used a metal tape measure and came up with 2.5, so very low tech and very accurate.
I listened to the Parliamentary debate. Johnson never fails to disappoint those who just want the truth rather than the hyperbole. I had to cover the screen of my tablet just so that I didn't have to look at him. The new plan will be a complete economic disaster for the UK for those who are already financially insecure, no wonder EU members were so happy yesterday, it's the best of both worlds for them. We are led by fools.
I noticed today that while the hair on the top of my head is growing quickly, the hair on either side isn't. It is also patchy, eight months after treatment. I feel that this may now be permanent, though I know that many people would think that this is trivial. To me, it's a very visible reminder that I've had cancer.
I left Parliament to watch the England V Australia rugby this morning. As I was expecting Australia to win, I had a very welcome surprise. We meet New Zealand next so I think England's luck is probably about to run out.
Weather is good for October. No rain or wind.
Enjoy the rest of the weekend.
Love,
Gill X
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Adagio, wonderful photos of beautiful Italy. I'm sorry that you didn't really enjoy the food, I'm a pasta and risotto fan so eat far too much at times.
Helen, so happy to hear that your health is stable. Don't let any thoughts of cancer get a look in, it can't be allowed to take any more of us than it's stolen already.
So many organisations are obsessed with the need to change. There's that old addage, 'if it ain't broke, don't fix it, if only management listened.
Keep on doing what you are doing - it seems to be working!
Love,
Gill X
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Hello HelenLouise,
Thank you for popping in. It was adagio who posted the photographs and who had the holiday in Italy.
I was glad to read you are enjoying the challenges that your work brings.
It is good that we all have gardens that we enjoy.
It is good to know that your health appears stable and I hope all will be fine when you next visit your oncologist in late November.
Now that you are off all medication, it will give your body a good rest and enable it to pick up and gain in strength. Keep up the good work.
Love.
Sylvia xxxx
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. Hi, I left the hospital on Thursday. the platelets were down to 9000. I had a platelet transfusion and have been improving. This combination of carboplatin and Gemcitabine wreaks havoc on the body. I trust next week to have my new blood count better. It also gave me a very serious sinusitis, opportunistic disease with such low defenses. I am at home, the rains have begun, how I live in a fourth floor without an elevator, it was very hard to climb the stairs, I think it will be my turn to move.
My mother stayed with me at the hospital on Wednesday, I think she didn't like it very much. She had to go to the emergency room again yesterday Friday. I feel I need peace and quiet to take care of myself and my things. There have been many shocks. Nice photos of adagio of Italy that good opportunity
Abrazos
Marias
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Hello Gill,
Thank you for your latest post. I suppose different hospitals have different ideas. I know that I was not given the option of a lumpectomy. When I was diagnosed the routine seemed to be six months of chemotherapy before surgery to help to shrink the tumour if it was large, 6+ cms, in order to make surgery easier. Mine did shrink but it did not disappear.
I do agree about Boris Johnson and I see he is playing games yet again. He has no mandate as a Prime Minister and is a disaster. I think he is fooling ordinary people and that when the General Election comes they will vote for him because if he delivers Brexit he will be the hero! People do not seem to realise that the deal he has cooked up with the EU is very bad and is not really Brexit. What a mess we are in. I am so fed up with all these days and days of speeches that get nowhere.
Try to be patient with your hair growth. Eight months is not that long. You might like to try the special Dr Organic shampoos in Holland and Barrat with a hemp oil base. I do not get the extra special ones but I use Dr Organic shampoo and conditioner two in one with hemp oil and bilberry extract. I alternate that with Johnson's baby shampoo.
I am seriously wondering what has happened to Mary.
That is all for now.
Love.
Sylvia xxxx
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Hello Mary. I hope You are ok. Lets us know
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Hello Mary. I hope You are ok. Lets us know
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Hi Marias,
Sinusitis sounds very painful, I've never had it but friends who have tell me it causes pain in the face and very persistent headaches. Just not what you want along with everything else.
Climbing four flights of stairs sounds challenging, to say the least. Also having to cope with the rains!
I do hope you can find the peace and quiet you need and a little happiness too.
Much love,
Gill X
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Whoops I apologies. Adagio loved your pics
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Hello Marias,
It was nice to hear from you and to know that you have left the hospital. I do hope you will make good progress now.
I have read how bad carboplatin can be, but I do not know much about Gemcitabine. I am not surprised that they have caused you so many problems. Your body will have been suffering anyway from all the previous treatment. I do hope that you will be able to have a rest from all this treatment and that you will feed your body good nutrients and that it will slowly get stronger.
I am so sorry you are having such a difficult time.
At least you are back home and that is the best place to be.
I can understand how difficult it must be for you without an elevator when you will be feeling so weak.
I was glad to read that your mother was at the hospital with you. It is not nice being alone in a hospital. I can understand that she did not like it very much because she is not well.
I do hope that you will be able to get some peace and quiet so that you can look after yourself and deal with anything that you need to do, but please take it easy.
Thank you for the photograph. I think they are probably of you, your mum and your sister. Give them our best wishes and say we are thinking of all three of you.
Love.
Sylvia xxxx
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Hello Marias and everyone,
I am posting a link for the drug gemcitabine (Gemzar). It has all the kind of side effects that you would expect from chemotherapy drugs in general. They are all toxic and cause a lot of harm to the body.
Best wishes
Sylvia xxxx
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hi Sylvia and all
Still in cumbersome sling, 10 more days. Then on to more therapy to regain range of motion and. Strength. Last week was very busy, one of the times that brings meetings, dinners and much dashing about.
I was looking over latest WDDTY, cover is "Reverse your Failing Eyesight". inside is an article titled "why your doctor doesn't know about diet." A member of NICE's submission team submitted suggestions about cancer treatment and care, here are some of his suggestions about cancer treatment and care, and NICE's responses. As I am sure you know, NICE is the UK's National Institute for Health and Care Excellence.
1. Will you review the use of complementary therapies that could be used alongside conventional treatments, especially to temper their adverse effects?
NICE response: we will not review alternative medicines.
2. Is cancer a nuclear genetic disease or a mitochondrial metabolic disease?
NICE: We will not review the causes of cancer.
3. There is good evidence that adjusting vitamin D levels of 25 (OH) D TO 100-150 HELPS PREVENT AND TREAT Breast Cancer.
NICE: We are not covering Vitamin D.
There is more of this page, I will continue it later. Right now, I am off to have annual Mammogram. Next week I see Oncologist.
I hope all are well, I will catch up as soon as I can.
Love, Mary
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Hello Mary,
I was so glad and relieved to hear from you.
I do hope that everything will right itself in the end with your arm problem. You must be counting the days to get rid of the sling. Do you know how much therapy you will need to regain range of motion and strength? It must all be very frustrating for you.
I was very interested to read that the latest cover of WDDTY is about reversing failing eyesight.
I know so many people here that have problems with their eyes. I am not surprised at all that doctors know very little about diet. It seems to me common sense that eating a varied and healthy diet is connected to how your body functions. I know that lutein is very important for good eye function and I know that one of the best sources is eggs. Of course you can get lutein supplements, but I prefer food over all these pills.
I am not at all surprised about the member of NICE's submission team. Obviously NICE has a completely closed attitude to everything that is not about more and more drugs. Orthodox medicine has a closed mind as well. It is not surprising that in the UK we are at the bottom of the pile when it comes to cancer treatment and survival.
I am going to try to get this article. In Exmouth the small natural food store that I use for shopping has changed owners in the past couple of months and the new owner does not seem to be stocking WDDTY, so I am a bit behind. The edition you mentioned is it for October or November? I think these are the two that I have not bought.
I do hope all was well for your annual mammogram and that all will go well next week when you see your oncologist.
I am so glad that I went through treatment the way I did and took homoeopathic and alternative treatments throughout it. I was lucky to have an understanding breast cancer surgeon who was happy to refer patients to the Royal Homoeopathic Hospital in Bristol and they worked together. I think that patients have to take charge of what they will and will not do for treatment. After all, it is their body that is being dealt with. I do not think I ever mentioned to my oncologist what I was taking.
As for vitamin D, I do believe in supplements for that, especially with our climate on the UK.
As for the causes or risk factors for cancer, I think that research should be ongoing and that a closed mind is not what we want. I think that the question about cancer and whether it is a nuclear genetic disease or a mitochondrial metabolic disease is a very interesting one.
That is about all for now. We are still on the Brexit merry-go-round and with Boris Johnson it is getting worse. I do not like the way he is trying to win the next General Election by pretending to be a man of the people, when he is very much a part of the Establishment.
Thinking of you.
Love.
Sylvia xxxx
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Hi Mary,
Good to hear that you're well. All those meetings and dinners must mean that you are now an expert on snappy dressing with one arm. Bet you can't do hook and eye fastenings, but then neither can I and nothing has actually fallen off or out yet - I make a special effort with bras.
Fingers crossed that you'll soon be back to your old self.
Please don't respond as left-handed typing is far too frustrating.
Love,
Gill X
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