Calling all triple negative breast cancer patients in the UK
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Hello Jags,
Thank you for your post. I do not envy you with all your renovation work and I just hope all goes well.
We have had quite a bit of news about the elections in your country. I am very interested in politics and current affairs but am not impressed with our government in the UK. They seem very removed from ordinary people.
Sending you best wishes.
Love.
Sylvia xxxx
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Hello 53nancy,
I was sorry to read about the difficult problems that your husband is experiencing.
I do hope that you will not have any problems now that you will not be seeing your oncologist. Try to put cancer away in a corner now and get on with your life. If you have concerns about anything see your GP and get a referral back to your consultant.
I was glad to read that you feel can now move forward. Relax and enjoy Spring and Summer.
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hello Mary,
I was so sorry to read about your problems with a water leak. You could have done without all that. You already have more than enough to cope with.
I think that with cancer of any kind the main emphasis seems to be on producing more and more drugs, which are usually more and more expensive, so that makes for more and more profits. I did read that lots of people survive primary cancers now and that metastases is the big challenge. Even so, I know people who are living a long time with metastatic cancer but they take so many drugs and are on and off chemotherapy etc. It does not seem like quality of life to me.
Nigel Farage is back in the news because he has created a new party, The Brexit party, and according to the polls it is ahead of the Conservatives and Labour together, but for the moment it is just for the EU elections on May 23rd. Those elected as MEPs may not even take their seats if Brexit gets passed in Parliament. We have had three years of complete farce!
I do feel for you with your physiotherapy and the problems you have coping. I know you have a lot of determination and you will get through all this. As we say in the group, one day at a time and keep looking forward.
Here in Exmouth we seem to be up and down with the weather. There is always a cool breeze blowing. We could do with some rain. I have organised some planting of begonias and geraniums today, so I do hope we do not go into dry weather.
That is all for now.
Love.
Sylvia xxxx
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Hello Marias,
I was so pleased to hear from you but very sad to read that the tumours in the lungs are metastases from the breast cancer.
I am sure that there will be some treatment to deal with this. You need to talk with your oncologist and ask what treatment is available. Ask him about chemotherapy. There is so much that can be done today. Try to remain positive and try to keep busy doing things that you love while treatment options are sorted out. I have a friend here who had metastatic breast cancer diagnosed about five years ago after thirteen years of being in the clear. The cancer has spread to her bones and she is on and off treatment, mostly chemotherapy,often to take orally.
Thinking of you and sending all my love.
Sylvia xxxx
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Hello Gill,
Thank you for your post. I shall answer it tomorrow as I am out of energy after a very busy day.
Love.
Sylvia xxxx
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Susie and Gill,
It's so unfortunate that so often politicians are liars and charlatans, it's just crazy. We have lots of them here, too.
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Hello everyone,
Raymond took these photographs yesterday in the grounds here and I thought you would enjoy looking at them.
First rose of summer- Peace rose:
Second rose of summer:
Deutzia:
Choysia:
Geranium, our first one in bloom.
I have forgotten what this is. I just call it 'daisy-like'! Osteospernum
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Hi Mary,
Agreed! However, when it comes to lying Boris Johnson is head and shoulders above other politicians. It's a sad fact that so many people seem to love him for his buffoonery and overgrown schoolboy act and fail to see him for the privileged megalomaniac that he is.
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Hello Gill,
I have not forgotten that I am going to post to you today. I just need some quiet time to myself to do it.
I am no fan of Boris Johnson either and I agree with all the comments about him from you, Mary and Susie.
I just hope that he does not get to be Prime Minister. The Johnsons are show-offs, father Stanley, daughter Rachel. The only quiet one seems to be the brother to Boris, also in the Government and much better looking and tidier than Boris.
Talk to you soon.
Love.
Sylvia xxxx
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Hello Sylvia,
Really beautiful flowers, the first rose of Summer is always special.
Gill X
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Hello Gill,
Thank you for your latest post. I do not envy you going through having a new roof put on your cottage.
You and Mary seem to be having a very busy time.
I do hope your daughter will find something within the medical profession that will not be as stressful as being a GP.
It is awful what has happened to this country since 2010. Cutting funding like this to all these vital services is so short sighted and should not be allowed. I shall be glad to see the back of this government with their arrogance and complete ignorance of the ordinary everyday lives of people trying to earn a living, pay their bills and bring up their children. I know that the big community college here in Exmouth, with about 2,700 pupils, is suffering from lack of money and asking parents to pay for basic supplies. My younger brother has just retired from being a governor at the school after about 36 years. His three daughters all went through this school.
With breast cancer the treatment is basically the same and as we all know it is surgery, chemotherapy and radiotherapy. The only difference is that with hormonal breast cancer you have the 'pleasure' of years and years on tamoxifen and/or aromatase inhibitors, with all their nasty side effects. I read long ago that surgery was the most important part of the treatment.
I think I was lucky back in 2005/6 that I did have the opportunity to talk with both my oncologist and breast cancer consultant surgeon. I do remember my oncologist telling me that with the chemotherapy she was going to have poison my body in order to try to kill off the cancer. She also told me that with radiotherapy there was a risk of inflammation to the lungs. When I was due to start docetaxel I asked the nurse looking after me on the chemotherapy ward for literature on the drug. She gave me leaflets but said it all sounds awful and you probably will not want it when you read it! With the neuropathy the oncologist told me that it was definitely caused by the taxane drugs. I think everything has become busier and more difficult since then and so the patients have to fight for their information. Fortunately there are forums like this one where you can get so much information as it were from the horse's mouth.
That is about all for now. I do hope you and Michael will have an enjoyable weekend.
I am glad that you enjoyed the photographs.
I am hoping for a quiet weekend after a very busy week here. Dare I say it, but I want some rain to water the grounds here.
Sending you love and best wishes.
Sylvia xxxx
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Hello everyone,
I do hope you will all have a good weekend. Many thanks to Mary, Gill, Susie, 53nancy, Helenlouise, Jags56, and Marias, for all you have done on the thread this week.
Warm hellos to Val, Viewfinder, Flora, adagio, Kath and Hanieh. We would love to hear from you and, Hanieh, please let us know you are alright with all the trouble that seems to be brewing.
Best wishes to all.
Sylvia xxxx
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Hi, Marias
I was wondering if you had learned any more, I was thinking you saw another doctor on the 17th.
I hope for better news for you, and a hopeful outlook.
Abrazos, love, Mary
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There was a news item in the Times this morning, saying that chemo sessions are being routinely cancelled, often at almost no notice, because of a shortage of skilled staff. Makes depressing reading.
Susie
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Hello Sylvia,
I do hope that by now you will have had your much needed rain. It rained all weekend here and is still doing so, at least the farmers will be pleased.
I agree with you regarding the importance of surgery in treating cancer - the sooner the better. However, waiting lists for cancer surgery inevitably continue to grow. The Norfolk and Norwich hospital was criticised by the Care Quality Commission for both the waiting time and the cancellation of operations. Cancellations were above the national average. I have absolutely no idea how surgeons are expected to remedy this. All medical staff are working flat out, but there are simply too few of them, too few beds and a shortage of theatre space. The NHS increasingly relies on the good will of its staff.
I expect everyone on the thread will be disturbed by the information Susie has found in the Times. The cancellation of chemotherapy treatments is shocking. As if having a cancer diagnosis isn't bad enough, without this. I was initially denied any chemotherapy at all and I still wonder why this was the case, given that it's the standard treatment for metaplastic breast cancer.
I've enjoyed reading 'How Britain Really works'. Stig Abel's views on the NHS are very close to my own. His history of NHS scandals is interesting, especially with the contaminated blood debacle being in the news on a daily basis. The way that victims and their relatives have been treated is disgraceful, it's a cover up on an epic scale. I did meet a patient who had been infected, he was incredibly angry at the the NHS denials. Unfortunately he died before he got to see the Health Service unreservedly apologising, though I doubt he would have been impressed. These scandals will continue until whistleblowers are listened to and treated with respect, instead of being threatened and bullied out of their careers.
Yes, breast cancer treatments are generally surgery, chemotherapy and radiotherapy followed by hormone treatment where appropriate. The consultant at The London Cancer Centre told me that I wouldn't need radiotherapy. I'd had a mastectomy and there was no lymph node involvement. I really didn't want to be overtreated and I was concerned about my lungs.
It's just stopped raining here, I have to hope that it keeps dry until the roofers have done their job.
Take good care of yourself.
Love,
Gill X
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marias, so sorry to hear your news; I am thinking of you, as we all are, and hoping that things will turn out better for you than it appears to be now. Keeping you in thoughts and prayers.
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Hi, Sylvia and all. I am feeling so thankful these days for all the support I found in this forum that helped me to keep going through some hard days. Now that I am at "loose" ends, so to speak - and I hope that will be for a long time - we have decided to "celebrate" by adopting a cat from the Humane Society. We lost our beloved 17 year old cat almost two years ago, just before I got my diagnosis, and my husband was reluctant to adopt another because we didn't know what the future held. SO - we have come to realize that depression over our loss has affected our lives to a certain extent since then, and now we feel so happy at the thought of a new "baby". She is a five year old tortoiseshell that has been in the shelter for over four years. We haven't been "approved" yet, but the paperwork has gone through, and we find it hard to believe we would be refused when they have tried so hard to find her a home. I just think of all of you and wish you the very best in your continuing journey. Love and hugs.
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Hi Nancy,
I hope your new cat makes you happy. Do post a picture when she's safely in her new home.
Susie
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Susie5, I will!
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Hi all, I was diagnosed with DCIS Grade 3 ER/PR -ve Her2 +ve in March 2019, tumour size 2.5cm. It was at government hospital and mastectomy was recommended. However, I have sought second opinion and one of the top breast surgeons in the country assured me that lumpectomy can be done.
The result of the surgery is 2% of the lump (4mm) is IDC Grade 2 ER/PR -ve Her2 -ve. I was told this is Stage 1A (can't find this on my hispathology report), treatment to do is 4 times Chemo (TC) and 15 times radiotherapy (I had done IORT during surgery).
As much as I hate going for chemo, doctor told me the recurrence rate within 10-15 years is 25% if without chemo. If I do chemo, the recurrence rate is 5%. Is this right?
I'm 41 this year and have kinda agreed on the treatments, which is scheduled in early June.
Anyone using the same chemo drug TC? I was told 3 boosters need to be taken each time after chemo, and there will be serious nausea, hair drop within 1-2 weeks after first chemo... my body is not the strong type and I'm worried about all the side effects, including the long term damage to the body.
PS: I'm in Malaysia, not UK.
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Hello Susie,
Thank you for your latest post. That is dreadful news about chemotherapy sessions being cancelled routinely and with almost no notice. I just do not know how they are going to deal with this shortage of skilled staff. It seems to be everywhere in the NHS.
We all know how keyed up we get for these chemotherapy sessions and for then not to have them happen is dreadful.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your post. We did have a little rain here in the past few days but it is nothing like we need for the grounds.
I was told years ago that surgery was the most important part of cancer treatment. It is awful about the waiting lists but it seems to be in every aspect of the NHS. As you say, while you are waiting the cancer continues to grow. I cannot see how this problem will be resolved. There are just not enough staff on the front line and there is huge demand. We are over-populated. It is not the fault of the hospitals. There are just not enough staff to go round. Staff are under such pressure that they leave or take early retirement and I think it is the same at the GP's surgery.
I have read in the past about the same problems with radiotherapy treatment. There are not enough specialists and patients are having to make long journeys to cancer centres.
I am sure all these problems must be the same at the RD&E here in Exeter.
I was glad to know that you have enjoyed reading How Britain Really Works. I think he shows very clearly that Britain does not work.
With breast cancer treatment you may now need all of the three parts. I was told though that surgery was always necessary. I do not know if that will change with earlier and earlier diagnosis. I have a friend here who just had surgery, a mastectomy, and is now on anti-hormone medication. For here it has not seemed a big deal and I do not think she asked any questions or knows really anything about breast cancer.
I think it is wise not to get over-treated if possible.
That is about all for now.
Love.
Sylvia xxxx
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Hello Nancy,
Thank you for your kind words about the thread. You have found a good way to celebrate and I am sure that your new cat will be well looked after. I am sure the cat will appreciate being in a new home after being in care for so long. Have you decided on a name?
Keep in touch with us.
Love.
Sylvia xxxx
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Hello Cocolala
Welcome to the forum. There are women here from all over the world and we're glad you found us.
We have all been through chemotherapy and I'm sure we were all terrified in advance. I know that the pamphlets I was given to read really put the wind up me but I had very few problems when it came to it. It's very hard to tell who will find chemotherapy gruelling and who won't. I don't know about Malaysia but our British NHS has got much better at dealing with side effects over the years. In the end, if you want the best chance of a long and healthy life, then you have to go for it. Although I find your doctor's talk of recurrence rates very precise and, therefore, not wholly convincing, I don't think there's much doubt that it will make a difference. You can always stop if the first go is too hard.
I don't know what you mean by boosters. Have you any more information on this. Is TC a 'taxane' drug, do you know?
Wishing you all the best,
Susie
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Hello cocolala,
Welcome to our thread. It was interesting to learn that you are from Malaysia. We have had posters from Singapore, The Philippines and India, as well as Iran and Colombia.
I was interested to read your details and to learn that you had sought a second opinion. That is always wise if you do not feel comfortable with the first opinion.
I hope you have recovered well from your lumpectomy. I was also interested to know that you had had intraoperative radiation therapy.
You mentioned chemotherapy and that you are going to have it four times. You put the drugs in abbreviation so am I to understand that you are having four lots of T (taxane?). Will this be paclitaxel (Taxol) or docetaxel (Taxotere)? Is the C cyclophosphamide (Cytoxan)?
I am not sure about the recurrence rate with or without chemotherapy. Perhaps someone will post in about this. This is a decision only you can make, but do bear in mind that you are young at 41 at diagnosis. We all go through variations on chemotherapy drugs but cyclophosphamide is very often in regimen as is one of the taxane drugs.
I do not understand what you mean by three boosters need to be taken each time after chemotherapy. I only remember boosters with reference to the radiotherapy treatment. I had three weeks of radiotherapy with boosters added with the treatment.
Not everybody has nausea and anti-nausea drugs are added to the intravenous chemotherapy drugs. As for hair loss, I would say the one to two weeks is right as the time after the time after the first treatment.
Try not to focus your mind on side effects. We have all survived treatment on the thread and even long-term damage such as lymphoedema and neuropathy can be managed.
You might want to ask icecaps to prevent hair loss and icing hands and feet to avoid neuropathy.
I hope this helps. Please let us know how you get on.
With very best wishes.
Sylvia xxxx (in the UK).
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Hello Mary,
I am missing you on the thread. I do hope all is well with you and that you are not overdoing things with all those chores.
I wanted to let you know that I am now just one month away from 14 years since diagnosis.
Did you see article 10 in the latest Chris Woollams email about how, in Israel, researchers think they are on the way to a cure for cancer? I do not know what to think of it. Chris Woollams seems to be very sceptical.
Today we are having warm weather, which is very welcome.
Thinking of you.
Love.
Sylvia xxxx
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Hi cocolala,
I'm sorry that you find yourself in this predicament, your uncertainty about how you should proceed is understandable. None of us on the thread are medics, but between us we have a wealth of experience to share, so you're definitely in the right place.
Chemotherapy can be difficult, but some posters here have sailed through it with the minimum of side effects. However, other women have found it more difficult. Nausea can usually be controlled by medication, you need to ask your oncologist about it. Most of us on the thread didn't use a cold cap, I didn't. There wasn't one available at the time and I didn't want to wait. Hardly anyone in the chemotherapy unit used one. My hair fell out after two weeks, but began to grow back when I had finished the first 3 cycles of chemotherapy and moved on to Paxlitaxel for my next 3 cycles. My eyebrows and eyelashes began to grow back about 2 1/2 months after the chemotherapy had been completed.
Peripheral neuropathy and lymphoedema are possible side effects but not everyone gets them - I didn't. For me chemotherapy was hard and I was utterly exhausted for weeks. My body needed time to heal itself and rest helped a lot. Sometimes I wondered if I should stop chemotherapy altogether or ask for the dose of to be lowered, however, I carried on and I'm very glad that I did. I feel that I've done the best I could possibly do to kill off my cancer. All the difficult times from the diagnosis to just a few weeks ago seem a bit like a dream now, something that's behind me, in the past.
I'm sorry that I cannot answer your questions regarding recurrence rates with chemotherapy versus recurrence rates without. Surely age, health status, genetics, access to good quality healthcare and many other factors influence recurrence.
I think you'll probably feel less anxious once you begin your chemotherapy. We're all here to support you.
Gill X
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Hi everyone,
Thank you Sylvia for thinking of me.
I've purposely become a lurker more than a participant in these forums. Besides being somewhat busy with social media for an association, and communications and photography for a woman's group at my church, I needed a break from frequently focusing on cancer like I've been doing since diagnosed in April 2108. I've read others in these forums that have needed to do the same.
I hope I've explained myself clearly and hope you all understand.
I know some of you are going through so much and I pray God give you peace and healing. You are all so courageous and have been an enormous inspiration and help to me.
My sister is having a double mastectomy, though the date has not been scheduled yet. I hope to be able to visit her in Seattle when that happens. It was a total surprise because for months her surgeon said she would need a third Re-Excision Lumpectomy, even though the doctor knew for a long time that my sister was BRCA1 and Triple Negative. Needless to say, my sister got a new surgeon. She is doing okay but, as expected, is feeling down. Thank goodness her work helps keep her mind off of things. We check in with eachother every day.
Again, I wish you all the best.
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Hello Sylvia,
Interesting that your friend doesn't want to understand more about her breast cancer. I have a triple negative friend who has chosen not to research either her cancer or her treatment. I wouldn't criticise this attitude at all, it's just not for me. I'm very glad to have found out as much as I could before treatment. I felt that I couldn't simply hand myself over to the medics, I very much needed to stay in control. I do trust most doctors, (not all), but don't wholly trust a hospital in special measures and so deeply in debt.
I haven't had time to read Chris Woolams email yet, I do want to look at his article on Israel moving towards a cure for cancer. I'm not surprised that he's sceptical.
The new roof has proved less than straightforward. The tilers have discovered asbestos. Samples have been laboratory tested and it's the less dangerous white asbestos, thank heavens. Today we have men in special suits, masks, goggles and so on, removing it all. Fortunately, it's dry here and they can get on with it. I'm beginning to feel that I live in the house that Jack built. Each time we undertake a renovation project we find expensive little surprises that have to be dealt with.
Hope you day's a lot happier than mine!
Love,
Gill X
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hello the pathology of the two nodules of the lung came triple negative. I am debased
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