Calling all triple negative breast cancer patients in the UK
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Hello Helenlouise,
Thank you for your latest post.
You are so lucky to have more common sense going into the strategy trying to control Covid. Here in the UK we are very good at messing up, but sadly lacking in common sense.
We have rushed into vaccination and love to boast about how we got in there quickly and are the champions. I think more thought should have been put into it. We are promoting the vaccines as saviours and that are not at all saviours. They will just keep people out of hospital, or so we are told. People think if they have the vaccines they are protected, whereas in fact it just minimises the severity of the virus.
I think it will be a long time before we have a normal life in this country again.
That is about all for now.
Keep well, keep safe and keep in touch.
Love.
Sylvia xxxx
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Hello Sylvia,
Your cousin's situation is concerning. It's to be hoped that reliable carers have been put in place and the system is working. It's difficult when he's so confused and too far away for you to check on for yourself. Covid makes the situation much worse as neighbours won't be able to drop in.
Congratulations on your 19th anniversary. Moving to Devon or Cornwall seems to be a dream most people never achieve, though it does have it's disadvantages once the holiday season begins. Covid probably won't keep people away from the beach despite the risk of being fined. We moved to Norfolk from Devon on April 1st 1987, I only remember because it was April Fools' day.
Some months ago I remember reading that not only were cancer surgeries being delayed while hospitals were dealing with Covid patients, but cancer research was also being held up. So much research is funded by the public, charity shops, cake sales, sponsored runs and so on and the pandemic has put a stop to all this. Scientists and laboratory staff have been seconded to Covid research and testing. The impact on Cancer treatment, surgery and research is going to be with us for years to come.
I was dismayed by what you were told about the NHS rolling out the Oxford vaccine rather than the more effective Pfizer version. Those Scientists involved in the development of both vaccines have been clear that the second jab should be given 21 days after the first and I'd feel a lot safer if the Government followed the science for once. Jonathan Van-Tam thinks that delaying for 12 weeks won't be too much of a problem and like you, I usually trust him as the voice of reason, however the fact remains that there is no evidence that an increased delay will still give us reasonable immunity.
That's all for now.
As always, keep safe. Best wishes to Raymond.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post.
As for my cousin, yes it is very difficult and very bureaucratic getting everything set up for his care, but I have made good progress.
I am not sure Raymond and I made the right decision moving to Devon, but I do not know where else we would have gone. I think this is a nice part of the country but I think, with hindsight, that it is not good to live in a seaside place like Exmouth. There are too many second homes here and too many invasions from people all over the the place. Property is way overpriced here. I think, with hindsight, we should have gone to a nice little town like Tiverton. However, the effect of Covid on shops here in Exmouth has been dreadful and there are so many empty shops. What made you move away from Devon?
I do share your concerns about what is happening with all aspects of cancer. It is not right and there has been way too much emphasis on Covid to the detriment of all other aspects of health care.
As for the vaccines, as usual Boris and his merry men will not carry them out as instructed. I also saw on the news that he has been doing a Cummings with his trip to East London. They are certainly not setting an example. It is strange that you mentioned Jonathan Van Tam. I had a lot of respect for him but I have lost a lot of it now. He has become too much of a celebrity and toes the party line.
Have you and Michael been called for any vaccination yet?
I do wonder what is going to happen on the day Biden has his inauguration. I cannot believe all the trouble that Trump has caused.
I was supposed to be having a quiet day today. I am not calling my cousin in order to see how he copes by himself. However, the phone rang and it was from a social worker who will be heading his case. It was a long call but very useful. I had just made some lovely oatmeal (pinhead and high fibre, topped up with some cranberries and pomegranate seeds when the phone rang and it was the social worker). Needless to say, when I got off the phone the oatmeal was stone cold and needed a knife and fork. I made some fresh.
I cannot believe how quiet this forum is. I think we have all been worn down by Covid and all the awful news that is fed to us every day.
That is about all for now. Take care.
Love.
Sylvia xxxx
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hi ladies.
Freaking out. My mom is almost 2 years out from diagnosis and the other day she found what looks like a bug bite on her breast tissue
No lump and not hard but I'm still freaking out to the point where i can't eat or sleep. She just saw her breast surgeon for a clinical breast exam that she gets done every 4 months.
I'm making an appt for her to see her breast surgeon but i can't stop thinking it might be stage iv
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Hi ucfknights,
You're absolutely right to have your mum checked just to be on the safe side. It might well be a bite, but you'll sleep much easier once you know for certain. As she has a clinical breast examination every four months you and your mum have every reason to be positive.
Hope you have an appointment very soon. Remember, most of us here will have experienced these moments of panic when we come across something different. It usually turns out to be a non-cancer related glitch, getting older, long term side effects of chemotherapy etc, however it's always worth having changes checked out.
Let us know what's happens.
Gill xxx
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Can anyone tell me how much their tumor shrunk on Carbo/Taxol, especially if they were able to get MRI's during chemo? I'd love to get a general sense of what is normal shrinkage--I just got an MRI after Infusion number 5 out of 12 (haven't done AC yet...)
Thank you all so much!
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Rosiecat, i called my moms breast surgeon and i explained to him how it looked and felt and he didn’t seem concerned especially since we saw him less than a week ago. He said follow up with primary!
I trust him and his team a lot and he knows my mom and I very well over the 2 years we’ve been with him! So this made me feel better
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Hello ucfknights,
I'm pleased you're feeling better having spoken to your mum's breast surgeon. It's good to know you have a reliable surgeon you both trust.
Gill x
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Hello gerry29,
I'm sorry that I can't answer your question. I had FEC T after mastectomy. I'm hoping that someone who is able to give you more information will see your post. However, from all I have read and heard I understand that Taxol works extremely well in shrinking triple negative breast cancer. Good luck.
Gill x
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Hello Sylvia,
Congratulations on making some headway in sorting out your cousin's care needs. Everything is extremely complicated these days and not remotely user friendly. How on earth would your cousin have coped without your help?
I can understand why you're having doubts about living in a seaside resort. Second home owners are a huge problem as they contribute very little to the local economy. Surely this needs to be sorted out before places like Exmouth lose any more shops, especially now Covid lockdown is forcing so many shop owners to shut permanently. We moved away from Devon with Michael's work. He'd worked for the Ministry of Defence since leaving University and decided to apply for jobs in other departments and found one in Norwich. He was posted to London after that, but with two young children I decided to stay in Norwich and Michael became a weekend Dad for a few years. Our son was born in Portsmouth and our daughter in Plymouth and both have moved to other parts of the UK but we'll stay in South Norfolk. The village feels like home to us after all these years, even if the village shop and the post office are long gone.
As for the vaccine roll out, it seems to be the mess that we both predicted. Some GPs have reported that they have arranged to vaccinate their patients only to find that the vaccine has been held up. My daughter reported on Monday evening that during the day her team of three GPs had vaccinated all the staff and residents in one care home. It seems to be going very slowly in some areas and I do wonder if we should trust the statistics we're being given.
Jonathan Van-Tam has certainly changed his approach, I'm guessing that someone in Government has leant on him. I do know that there's a need to balance the vaccine roll out with the need to keep the economy going by ending lockdown and getting people back into work. I have to agree with Joan Bakewell though, the scientists who developed the vaccine are still stressing that a second jab is needed 21 days after the first. I don't see how Jonathan Van-Tam can argue otherwise.
The Norfolk and Norwich University Hospital, being a coronavirus hub, has built an outside unit complete with special air filters to continuously pump out old air and replace it with new - which would have made it much safer for staff. It is designed to take 10 specialist Covid beds, each requiring a specialist intensive care nurse. I've just heard that due to a shortage of trained nurses, it cannot be used. It's all empty promises, nothing thought through and every day we're fed with whatever rubbish the PM thinks will give the voters the impression that he knows what he's doing. I despair.
That's all for now, weather very grey and miserable here.
Love,
Gill xxx
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Hello ucfknights,
I have just read your post concerning your mum and I can understand your concern and anxiety. We all go through these bouts of worry but it is better to try to stay calm, contact the consultant, get it checked and then get peace of mind. With your mum you need to stay calm all the time.
I do hope you will get good news from all this and remember that the consultant does not seem concerned about the description you have given of your mother's breast tissue.
Sending you and your mum best wishes and remember to let us know how she gets on.
Love.
Sylvia xxxx
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Hello gerry29,
I have just read your post and I noticed that you have not put in an details about your breast cancer, such as tumour status, grade, and what kind of breast cancer you have. It would be useful if you could fill this in on your profile.
You mentioned that you are going through chemotherapy and because you are asking about tumour shrinkage I am assuming that you have not had surgery before chemotherapy.
I do not think that you can talk about 'normal' shrinkage as everything will be very individual. As long as the chemotherapy drugs are helping to shrink the tumour, as the infusions progress, you will know that the chemotherapy is working. You have had only five infusions out of twelve and you have not yet done any AC. I am assuming that you are doing twelve infusions of carbo/Taxol.
I am now fifteen and a half years since diagnosis, and I had a large tumour, 6+ cms. I had AC for three months and then docetaxel (Taxotere) for three months. The tumour reduced a little over the sessions but it did not disappear. I then had a mastectomy. We are told that the taxane drugs, Taxol and Taxotere, are very effective against triple negative. Carboplatin was not used much in the UK when I was going through treatment, but it seems very popular now.
Wishing you all the best and good luck with your treatment. Keep looking ahead and take one day at a time.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. I do agree completely that everything is complicated these days and not user friendly.
I do agree about second homers and how they do not really contribute to the local economy. Fortunately in the apartment complex where I live most of us are full time owners. However, when the lease was made up there was nothing about second homers not being allowed. If I were able to alter this now I would. We can add regulations to the lease and we have done so for quite a few things, but we do have to put it to a vote of all owners and I do not think it would pass. When an owner wants to sell, consideration of what their actions may do for those still here, does not come into it for them. They just want to sell. Living in an apartment complex is quite complicated.
I was interested in what you had to say about your movements from Devon to Norwich. I can understand how you like the village life in Norfolk and it is such a pity about the village shop and the post office not existing any more. It is interesting how we move around in life and I always wonder about the 'what ifs' if we had taken other paths.
As for the vaccines, I do wonder where we are going. I think that people are hearing what they want to hear and are not taking in what they are being told. I listened to the 8 am news on Radio 4 this morning and it said that the vaccine would last only about five months and then I suppose you would need another injection. It also said that it would not stop spread and that you could still infect others after the vaccination. It looks as though this vaccination will have to be ongoing and even more frequent than the flu vaccination.
I do not think people are listening to this. Another news item was about travel agents and how the demand for holidays abroad have soared. People are booking for holidays in the summer. What is even more worrying is that this demand for holidays abroad is coming from the over 55s. Sometimes I feel as though I have to give up on people.
Yet another news item was about how the Nightingale hospitals were going to be used as vaccination centres. These hospitals change purpose on the whims of the government, much like everything else to do with Covid. The real problem is lack of staff in everything to do with the NHS.
You will be delighted to know that there will be yet another briefing today. It will be all boasting and nothing of substance. I have listened this past week to two interviews with Matt Hancock and there is no attempt to answer questions. I do not think the interviewers are tough enough on all this evasion. I think they need someone like Andrew Neil. Like him or not he knows how to get answers out of these trained answer evaders.
It is yet another miserable wet day in Exmouth and I am wondering what the day will bring.
I cannot believe how quiet the triple negative forum is. Will it ever get back to normal?
It looks as though you and I are the only regular posters on this thread. Everyone seems consumed with Covid but I worry very much about what is going on with cancer care and other serious illnesses.
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hi all,
One year after my surgery in May, I have found out two new lumps, one bigger one smaller. July 2019 ultrasound shows they are ill defined, but October 2019 ultrasound shows they have changed to rounder shape and smoother edge, which doctor concluded as liquid lumps. However, few days ago the ultrasound found calcifications in the bigger lump, and biopsy result for both big and small lumps shows high DCIS background with some cancer cells. I am having a local recurrence.
I was suggested to have a mastectomy and reconstruction. If the lymph nodes are clear and CT scan result is good, I do not need to undergo chemotherapy this time.
I am 42 and was advised to do recon using the fat and muscle from my tummy as I had a PDA surgery at my back when I was small, so that is not the option. However, doctor said the size of recon breast might not be the same size (although my breast size is small) due to tummy not much fat. My concern is the surgery at tummy, I'm not sure whether there will be any side effects especially my wound healing is always very slow. Anyone can give me some opinions?
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Hi Cocolala,
I think you need to discuss your slow wound healing with your surgeon. Is there a medical reason for it? My breast surgeon was keen for me to have reconstruction at the same time as my mastectomy. I decided against it for the following reasons :
I was told that a unilateral mastectomy with reconstruction would take approximately 7 hours and I didn't want to be under GA for that long
I was concerned about infection, blood clots or tissue dying
Having done some research, I discovered that reconstructions often need adjusting at a later date, so more surgeries are likely - albeit only minor
Having fat and muscle removed from the abdomen, particularly when you are very slim may cause weakness which can result in a hernia.
I was concerned that if I had a recurrence, I might not notice until my next mammogram.
I was 63 when I was diagnosed, had fairly small breasts and I wanted to get the cancer out without the delay likely to be caused by the breast surgeon and plastic surgeon having to be available at the same time. I opted for a prosthesis which looks similar to a cosmetic breast implant. It looks completely realistic when I'm dressed for going out, at home I don't bother using it. Hope this helps.
Fingers crossed for clear nodes and CT scan.
Let us know what happens.
Gill X
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Hello cocolala,
I do remember you very well from when you last posted. I was sorry to read that you are having a local recurrence. Just keep telling yourself that you will get through this.
I do hope your lymph nodes will be clear and that you will have a good CT scan result, so that you do not need to go through chemotherapy.
You will need to have a good think about what is best for you and make a decision. These decisions are always difficult, but we have to make them, and then keep looking forward.
I had a mastectomy back in 2006 and did not consider reconstruction. I was told that a mastectomy was not considered major surgery and took about 45 minutes, but that a reconstruction was a very long and more complicated surgery. I did not even contemplate reconstruction.
I think that Gill has summed it all up very well. However, we are not allowed on the forum to give advice, so you must make that decision for yourself. We can only tell you what we did for our own particular case.
I have been happy all these years wearing a prosthesis inside my bra.
Please come back and tell us how you get on.
Love and best wishes.
Sylvia xxxx
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Hello ucfknights and gerry29,
I do hope you have read our posts in response to yours and that you will let us know how things are going.
Hello to Mary, adagio, Kath, Helenlouise, Paula, Jags56 and any others who are posting and viewing. I do hope all is well.
A special hello to adagio. I do hope you are making a good recovery.
Hello Gill, I do hope you and Michael will have a good weekend and have some time to yourself. I do hope the snow keeps away.
It has been a very long week here and I have had so many phone calls from various quarters about the care package for my cousin that I am suffering with my throat. I do dislike the dark mornings but at least the evenings are opening out a bit.
I started to watch the briefing this evening but had to give up. There is so much unbearable boasting that I have to leave the room!
It now seems cases in the south-west are going up. I think a lot of it is to do with the bubble and people coming into other people's homes. They are either ignoring the rules or do not understand them. We have had 68 changes of rules since it all began!
That is all for now.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I was interested in what you said about the Covid vaccine and the likelihood of needing to be vaccinated on a regular basis. With the annual flu jab it is an educated guess as to which variant is most likely to appear in any given year. If the guess is correct, a vaccination will offer immunity over the Winter flu season at most. With Covid, according to the BBC News website, virologists are able to tweak the vaccine each time a new variant appears, so they won't need to go back to the 'drawing board' when Covid inevitably mutates again and again. No one seems to know how long the Oxford or Pfizer vaccines immunity will last. Five months is the estimate most often given, but several scientists have said that it's at least 5 months, but it is hoped that it will be much longer. Time will tell. My hope is that a virus this successful at infecting people will eventually become more like the common cold - always with us and a complete nuisance, but rarely a killer. Like you, I can't imagine Covid ever being eradicated.
I can't understand why people are expecting life to get back to normal later in the year when scientists have clearly stated that while lockdown will probably be over in the Spring, the masks, social distancing and so on will remain. We'll be taking our holidays in Scotland where our son lives and the Midlands where our daughter and grandchildren are, but only when it's safe to do so. We'd hoped to visit Devon as I have a second cousin in Plymouth and friends in Newton Ferrers, but will probably save that for 2022 as we wanted to rent a cottage by the sea which would need to be booked soon and this isn't really the time. If things change I'll be sure to let you know so that we can meet up.
Well this post has moved far, far away from triple negative breast cancer. It would be interesting to hear from newly diagnosed patients in the UK in order to have some reliable accounts of how or even if hospitals are continuing to fit surgery and treatment in. A relative has recently had a lumpectomy in Derriford Hospital. Her referral was very quick as was her surgery. However, she has yet to be offered further treatment and hasn't received the pathology report from her breast surgeon, three weeks after the lumpectomy.
Cocolala in Malaysia is being offered a mastectomy and reconstruction, so cancer surgeries at her hospital seem to be functioning well. I wonder what the situation in America is? Covid infections are extremely high, so are breast cancer surgeries/treatments being delayed or cancelled? What is the situation in New Delhi where Jags is? It would be interesting to hear peoples' experiences.
I barely listen to the PM's briefings, he's only interested in telling us how clever he's been in ensuring that the first person in the world to be vaccinated was here in Blighty. Avoids any questions about the atrocious rise in Covid infections and deaths since he allowed families to travel and mix over Christmas. His performance at PMQs was disgusting, though the Speaker did at least stop him this time. The UK is in the midst of a pandemic, our infection rates, despite being an island, are amongst the highest in the world yet he answers serious questions with childish insults, rudeness and lies. When, if ever, will the Government send Johnson back to the nursery and put a grown up in charge?
The ground is covered with snow here. It's not deep and is already melting.
Keep warm and safe.
Love,
Gill xxx
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Hi all,
While researching on the breast reconstruction, I came across an information from our local Breast Cancer Survivors and Warriors facebook group, that a Triple Negative Breast Cancer stage 1 patient was given 16 doses of chemotherapy, and I only had 4 doses. Upon checking with the group admin, I understand that that particular oncologist gives this treatment to all triple negative patients regardless of the stage. I'm wondering is my 4 doses too light as a treatment for triple negative that i have a local recurrence just after one year?
I have set an appointment with my oncologist tomorrow, and to my surprise my breast surgeon did not let him know about the biopsy result. I'll see what he says tomorrow, and decide whether I need a second opinion.
FYI as I know, hospitals in Malaysia are mostly functioning as usual, especially private hospital. Government hospitals where they have more patients, need appointments instead of walk in. Some services (for instance physiotherapy, I believe those not urgent treatments) rescheduled patient's appointment to avoid too crowded.
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Hi Sylvia, Gill and all
I brought up the thoughts of moving after husband died because rural life is one thing when one has a partner, but something else when one is alone. I probably will not move, due to being conveniently located for my purposes and also from having plain old inertia.
I am fast approaching my seven-year mark since my BC diagnosis, that will be February 2nd. I will bring it up again then! Congrats again, Sylvia, on your many years distant diagnosis!
As far as I know, Cancer patients are being seen in timely fashion here in USA. One of the things I have noticed over the past year is some people are still reluctant to go to the hospital, and put things off themselves, although those people are fewer these days. I'm sure there are slowdowns when doctors themselves and nurses come down with COVID or something else.
I also opted against breast reconstruction after BC diagnosis, My surgeon suggested removing both breasts and having reconstruction but I refused, having an ill husband at home. I wanted to be finished as soon as possible. Having breast reconstruction is a long-drawn-out process, and one needs help at home because lifting is absolutely forbidden for some time. That being said, the people I know who have had that surgery are pleased with their results. I also shared Gill's worry about mammograms being less effective at seeing problems with having to work around the implants.
A friend told me I should get in line for the Covid vaccine now, it is time, since I am over 65 and have had BC. However, I am not in that big a hurry since I would rather be later on down the line, hesitant about yet another vaccine. We'll see. I think the big roll-out was rather disorganized and does not have clear directions yet. I would think I would be behind the healthy 70-80 year-olds.
All is in tumult in this country because of the Presidential Inauguration in 2 days. With any luck, things will go smoothly and get over with, with no repeat of the troubles at the Capitol last week.
I hope all are well, we had a nice snowstorm a few days ago, I spent a lot of time in it because the puppy had diarrhea and there were many trips outside, not ideal ha!
Talk to you soon, much love, Mary
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Hi Cocolala,
I'm not medically qualified, but sixteen doses of chemotherapy sounds excessive. I suppose there might be some reasoning behind it in some cases..... but all? In the UK Paclitaxel is usually given in 9 - 12 weekly doses and Docetaxel in just 3 doses, one every three weeks. I think this may sometimes vary according to patient needs or tolerance. If you remain concerned or confused after speaking to your oncologist, then a second opinion might help to clarify things. I paid for a second opinion from a well respected consultant oncologist at a renowned cancer centre in London and found it extremely useful.
Thank you for your information regarding hospital treatment in Malaysia during the pandemic. Like you, Mary says that hospitals in America also appear to be functioning as normal. Access to surgery and treatment is far from normal in many parts of England as Covid patients are given priority over most other life threatening conditions.
I do hope your oncology appointment tomorrow will help to address your concerns. Sometimes as patients we need to push for answers and make sure we're completely satisfied that we are being given the full picture by our doctors. Always remember, It's your body and you are in charge. Let us know what happens.
Good luck!
Gill X
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Hello Gill,
Thank you for your latest post dated January 16th. I do think the coronaviruses will be with us for ever, just like the flu virus.
It is not getting much publicity, but there have been 39 deaths after the Pfizer vaccine in Norway. We saw it on the television text on RT but I do not think it has been mentioned elsewhere. Apparently some of the side effects of this vaccine include fever, nausea and diarrhoea. I suppose how you react to a vaccine could probably depend on your state of health and the strength of your immune system at the time having it done.
As for when lock-down or even tiers will end is anyone's guess but I do not think it will be any time soon, and probably not this year at all.
I am concerned at how far away from breast cancer with triple negative receptors this thread has gone, and I think it is time to get back to it. It could be that there is so much information out there now that many newly diagnosed patients do not feel the need for information, but I do think there is a need for comfort, support and reassurance. If you take this forum, there is so much information under the section offered by bc.org under All Topics that you can learn a lot. Active Topics is also interesting and you do have a lot of topics there that can act as a relief from a patient's head being crammed full of breast cancer information. The threads with photographs are relaxing, and there are others for book lovers, pet lovers and just looking for a bit of fun lovers. You need to give yourself time to work out what part of the forum can help you the most.
We have to remember, all the time, that we are not doctors and that we cannot give advice. I sometimes think there is too much difficult medical information on pathology reports that are not really useful. We need to know what kind of breast cancer we have and that is not the same as the receptor status. We need to know how big the tumour is to give us the stage, what the grade is and what the proposed treatment is. We all know that it will be a mixture of surgery, chemotherapy and radiotherapy. If the tumour status is hormonal there will be medication that can be prescribed after the standard treatment and if we are not hormonal the standard post treatment medications are not useful.
I do agree with you that it would be interesting to hear from newly diagnosed patients in the UK to hear how they are being treated under Covid. Please let us know how your relative gets on. It is good to get a quick referral, but not good to then be left waiting for a pathology report and to know what treatment she will be getting. Let us hope others will post to let us know how they are being treated. It could be that things are slow in Devon.
I think the less we say about our present government the better. I cannot stand the slow rituals and the long boring speeches that go on in parliament. It becomes like a circus. We need to modernise and get the parliament out of the Palace of Westminster and into a modern more business-like building. Turn the palace into a museum. The devolved governments work so much better.
I do hope the thread will liven up because it cannot be left to the two of us to put so much into it without support from others.
I have just completed ten weeks of dealing with my cousin. The latest thing was that, because he spent three days in a nursing home, far from London, I discovered yesterday that he had been deregistered from his London GP surgery and listed as permanent in the home in the surgery used by the nursing home. Apparently this is standard practice. I found out by accident. I have now completed online forms to re-register with the surgery where he has been a patient for sixty years!?
It is such a miserable day here that you really do not want to look out of the window. I am wishing for lots of dry weather so that the gardeners can have a good tidy up in the grounds.
Keep well and keep safe.
Love.
Sylvia xxxx
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Hello cocolala,
I do agree with Gill about what she said in her post to you. This is something you need to discuss with your oncologist. Remember, that some patients are having their chemotherapy in weekly sessions and so will be having lower doses each time. Others will be on an every three weeks regime and so will have higher doses each time. I have been running this thread for quite some time and I remember patients saying that they felt much better with the weekly lower doses.
As for the two different taxane drugs that are used, I would not think there is much difference between the two – paclitaxel (Taxol), docetaxel (Taxotere). When I was going through treatment my oncologist told me that she was going to give me docetaxel because it was less harmful on the heart. I do not know if this I true, I tend to think that both can damage the heart. We all know the damage that chemotherapy drugs do to us. I remember being told that epirubicin (Ellence) and doxorubicin (Adriamycin) damage the heart. We just have to get on and go through the treatment.
My oncologist did tell me that it was the docetaxel (Taxotere) that had caused the neuropathy in my feet. I also read that the taxane drugs could cause lymphoedema. We just have to accept that there will be side effects to all drugs.
Thank you for the information that you posted about how breast cancer is faring in your country.
That is all for today.
Love and best wishes.
Sylvia xxxx
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Hello Mary,
I was glad to see you back on the thread. I am out of time for today. I shall continue some time tomorrow.
Love.
Sylvia xxxx
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Hi Mary,
Enjoyed reading your interesting post.
Congratulations on being very nearly seven years out since diagnosis. That's going to give a lot of our triple negative browsers a lift - very much needed for those going through treatment during the pandemic. I was pleased to hear that cancer treatment is still being offered in a timely fashion in your part of the States. I wonder what is happening to patients with the barest minimum of health insurance? As you'll have seen from Sylvia's comments, the NHS is at breaking point. Having the highest Covid death rate in the world has devastated and overwhelmed our hospitals. Our toddler in chief and his cabinet playmates refuse to take responsibility and Conservative MPs are too frightened to challenge the status quo.
I watched part of Biden's inauguration Ceremony yesterday. I do hope that America will settle down again after the appalling events of the past few weeks, especially those of the Wednesday before last.
Mary, if the Covid vaccination is available to you it might be a good idea to bite the bullet and go for it, particularly as you enjoy travelling abroad. One cruise company, Saga, has introduced a rule of no vaccination, no cruise. I think other companies will do the same and airlines will follow. No one in the UK will be forced to have the vaccination, but unprotected people may well be prevented from travelling in the future. That would be an effective inducement for many. Our vaccine roll out is the usual shambles but I should be invited to have it by mid February. I shall grab the opportunity with both hands, not expecting miracles, but contracting coronavirus with a much lower chance of dying from it would be good enough for now.
That's about all,
keep safe and well.
Love,
Gill xxx
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Hello Sylvia,
I have to rush off now, but will be back to answers your post later.
A dry sunny day here, but very windy.
Love,
Gill xxx
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Hi, Gill
I have not heard of anyone being refused BC treatment, or any cancer for that matter. Of course that doesn't mean it doesn't happen! I think there are people who fall through the cracks because the very low-income people and people who don't like going to a doctor are more reluctant to have the suggested screenings. Thus cancers could be larger before found, and have worse outcomes. Covid has definitely hampered many hospitals, but I do recall last summer a time when big-city hospitals were overwhelmed with Covid patients, and hospital nurses here were being laid off because there weren't enough inpatients. I think this is the difference between rural and big-city, population just isn't that dense. I do know many people who put off surgeries because they didn't want to be in a hospital for fear of contracting Covid.
My foot-dragging with the Vaccine is caused by this: Some years ago I had a very bad reaction to a Tetanus shot, an anaphylactic reaction with trouble breathing. I was told to never have another. So now some of the information coming out says to take with great caution if one has ever had a severe reaction to a vaccine. To me great caution means in a hospital setting. But what I am hearing is that in my area, the vaccine is going to be given in a drive-thru setting that is managed by our county health dept. I am going to talk to my doctor first and see what he thinks. I do want to get the Vaccine, but it will probably be a bit later. I just read a statement from our State Governor and he says vaccine supplies are very limited, and demand is higher than supply so its sounding a bit like a shambles to me too. Next Monday I am having a Cataract removed from my Left eye, so that is taking precedence for now.
I also think cruise ships will be demanding either clean Covid tests or proof of vaccine before traveling. My trip is a year away so hopefully things will get less confusing by then and I will have such proof.
I just talked to a friend of mine in another county, she was told to call her doctor to check on vaccine and he signed her up, so it sounds like different counties, different procedures.
I am happy to almost be to February 2nd my BC diagnostic date in 2014. Those were such dark days, I did not think I would make it this far back then.
I did not watch the Inauguration, I did hear some of it on the radio. It sounded like most of what Biden is going to do is just reverse things that Trump did. Since I liked many things that Trump did, (controlling illegal immigration, cutting ties with WHO, helping to bring peace to part of the Middle East, making us energy independent) I am not happy about it. But that's just my opinion, I will have to tolerate it.
I do hope UK gets things going and you get your Vaccine soon, the thought of not having to worry about getting a severe case is just wonderful. We'll keep in touch about it all.
Talk soon, love, Mary
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Hello Sylvia,
Like you, I was concerned to hear about deaths occuring in Norway after the Pfizer vaccine was administered. These deaths occurred in residential care homes for older people and it is being explained away as a normal death rate in this age group. Nothing untoward has been reported here or anywhere else in Europe. I do think this will unsettle some people. As the roll out gathers pace the likelihood of mistakes grows. My main concern is that vaccines could be accidentally contaminated, poorly stored and therefore useless or that the vaccine given to us in the first instance will run out and when we eventually have the second jab we'll be offered something different. I'm not in favour of mixing vaccines, but it hasn't been ruled out. Having said all that, Michael and I are keen to be vaccinated, as we'll have at least some protection from becoming dangerously ill with Covid. Most scientists agree that It's likely to become an annual jab.
It's appalling that your cousin was deregistered from his local GP practice whilst in hospital. I really can't understand why. A completely unnecessary process causing extra form filling and of course, something else to worry about. I hope your cousin is able to cope at home with the help of his carers.
With the delays at the borders caused by brexit I'm concerned that cancer drugs may be held up. Many doctors predicted that this might happen but I've heard nothing yet. I do know that some medication had been stockpiled before brexit. It does look as though we'll have to rely on drugs being flown in, which will increase costs. Now that the UK has cut itself off from the benefits of the EU's cheaper bulk buying of medical supplies, there will no doubt be sharp rises in costs that the NHS simply won't be able to absorb.
As a result of the pandemic, Northern Ireland has reported that 275 'red flag' cancer patients have had urgent surgery cancelled in the past week. With no sign of Covid infections dropping significantly, delayed cancer surgeries will increase week on week. It seems to me that this is a wake up call for the Government to reorganise cancer treatment and open specialist cancer centres throughout the UK. Ordinary seasonal flu causes havoc on the wards most years and then come the inevitable surgery cancellations - it really can't be allowed to continue.
That's all for now. Weather here is bright and sunny.
take care.
Love,
Gill xxx
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Hello Mary,
Thank you for your post of January 18th.
I shall be thinking of you on February 2nd when you reach 7 years since your BC diagnosis. I think you have been with us since you were diagnosed and must be one of the longest posting people on the thread, along with adagio. Thank you for staying with us.
On Wednesday January 20th I reached 15 years and seven months since diagnosis. It does seem a lifetime ago.
I feel that we are living very sad times in the UK. Our NHS seems like a sinking ship. It is sad because I think it was our proudest achievement, but it has been battered and beaten for many years. It was not built to deal with such a high population or for the kind of society we are now living in. I miss the country in which I lived through my childhood and younger days. Life was so much simpler then and to me more enjoyable, even though people were a lot less affluent. The NHS has become too bureaucratic and too impersonal. A friend of mine has just gone through the most awful experiences in the hospital here. Raymond and I are determined to keep away from it all. We have not been called for any Covid tests or vaccinations.
I find I feel fed up with talking about Covid and the same goes for the mess that Brexit is causing. We were not given full details about Brexit and I think we have been had.
I think we need a General Election and another referendum done seriously and with the full facts.
The weather has been dire here, cloudy, wet, damp, cold and windy. It needs a lot of motivation to face the day.
Raymond continues to make progress but we are not getting out walking as much as we should. We have been told to stay home anyway by the powers that be!
That is all for now. We wonder how adagio is getting on and do hope that she is not having too many problems.
Take care, Mary.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. Raymond and I are somewhat reticent about the vaccines. We shall certainly not go to any mass vaccination events because of the queues and lack of social distancing. We think these gatherings could be super-spreaders to use the term in vogue. I shall phone our small private pharmacy, where we had our flu injections done, to see if they are doing any vaccinations and what vaccines they are using and what they will be doing about the second vaccination.
There was a briefing this evening but I did not watch it. I cannot stand watching the usual Three Musketeers doing their pantomime act.
Brexit is already proving a disaster.
As for my cousin, I have not been impressed with the bureaucracy involved with setting up carer visits etc. If it is progressing it is largely thanks to me and my youngest brother. We are both like a dog with a bone!
I have no doubt at all that cancer patients are suffering as a result of the coronavirus and this is not right.
As I told Mary, I am fed up with hearing about Covid and Brexit. This country is a mess.
I wonder what will happen in the US now that Donald Trump has gone. I just hope it is peaceful for the sake of the American people. I am wondering whether Donald Trump will set up his own television channel or social media.
I am hoping that I can get a bit of time to do some of my own reading during the weekend.
I do home you and Michael will have a good weekend and that you can enjoy some peace and enjoyable time to yourself.
Let us hope the forum and this thread will be more active and focussed on breast cancer.
I do hope that adagio will be able to pop in, as well as Kath, HelenLouise and Jags56, as well as Paula and some of the other posters. I do hope those who posted asking us various questions will post to say thank you for the efforts some of us made to help them.
That is about all for now. I feel that I need a good night's sleep and a relaxing weekend.
Take care.
Love.
Sylvia xxxx
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