Topic: Calling all triple negative breast cancer patients in the UK

Jan 11, 2021 07:31AM Rosiecat wrote:

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

Jan 12, 2021 08:34AM - edited Jan 12, 2021 08:36AM by ucfknights

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

Jan 12, 2021 10:05PM gerry29 wrote:

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!

Jan 13, 2021 06:38AM Rosiecat wrote:

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

Jan 13, 2021 08:30AM Rosiecat wrote:

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

Jan 13, 2021 09:44AM sylviaexmouthuk wrote:

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

Jan 14, 2021 10:55PM cocolala wrote:

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?

Jan 15, 2021 01:54PM sylviaexmouthuk wrote:

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

Jan 16, 2021 09:09AM Rosiecat wrote:

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

Jan 18, 2021 10:19AM maryna8 wrote:

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

Jan 19, 2021 10:30AM sylviaexmouthuk wrote:

Hello Gill,

Thank you for your latest post dated January 16^th. 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

Jan 19, 2021 02:16PM sylviaexmouthuk wrote:

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

Jan 21, 2021 09:38AM Rosiecat wrote:

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

Jan 22, 2021 07:30AM Rosiecat wrote:

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

Jan 22, 2021 01:45PM sylviaexmouthuk wrote:

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