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

Dec 10, 2020 04:20AM NancyJGH wrote:

Thank you Rosiecatt and Sylvia!

This forum is absolutely comforting and SO informative. You both have been wonderfully welcoming and I'm sure I'll be looking every day. I'l definitely keep you posted! My best to everyone on this forum!!!

xxoo

Nancy

Dec 10, 2020 04:18PM - edited Dec 10, 2020 04:23PM by pkville

Dec 10, 2020 10:01PM Rosiecat wrote:

Hello Sylvia,

My Zoledronic acid infusion went well, the nurse managed to find a vein very quickly - a rare event. The chemotherapy unit appears to be working as normal. Patients are asked to phone the unit as soon as they've parked. They remain in their car until a nurse phones back to say she's ready for them. All very efficient and as safe as it could be. I had no side effects at all, I sometimes have a headache, but not even that this time around.

I wonder if Helenlouise has the results from her biopsy yet? I thought that she was expecting them at the end of last week, but there are often delays with hospital tests since Covid.

I absolutely agree that our turkey farms crowd the birds in and this causes regular outbreaks of bird flu and other infections. Apart from the obvious dangers of bird flu mutating and spreading to humans, the cruelty of intensive modern bird/livestock farming is breathtakingly cruel. We eat far too much meat in the UK, most of it cheap and mass produced.

I'm undecided about the Covid vaccination. I don't feel that we are being fully informed. It seems that neither those administering or the NHS staff receiving the vaccination had been told about the danger of an anaphylactic reaction for those with serious allergies. What isn't clear is whether this was the fault of those producing the vaccine, or the NHS itself. Whatever the facts, it begs the question, what else haven't we been told? I probably will have the jab, but will be watching what happens to the recipients very closely.

That's about all for now, I do hope your cousin is recovering from both sepsis and Covid.

Stay safe and well.

Love,

Gill xxx

Dec 11, 2020 12:17AM - edited Dec 11, 2020 12:21AM by Rosiecat

Hello Helenlouise,

My treatment went very well and no side effects at all. My next appointment is towards the end of June when the world might be a safer place, if not, at least the roses will be in full bloom.

Congratulations, what good news! After everything you've been through, all the hopes (and the fears), waiting to see if your treatment was working, waiting for biopsy results, the doubts, the list goes on. It's really not surprising that achieving NED has left you feeling flat. Emotionally drained and mentally exhausted perhaps? I'm sure this will pass over time. I experienced it myself after being told that I was very lucky to be alive after being so ill with sepsis and c difficile. I felt that I was letting the whole medical team down by not being completely ecstatic or at least slightly pleased. I remember feeling a bit lost and let down at the time. I'm sure a good psychologist would be able to enlighten us as to why this happens. I do know that it's a fairly common experience.

In the meantime just take life at it comes and give yourself plenty of time to adjust.

My very best wishes,

Gill xxx

Dec 11, 2020 04:56AM adagio wrote:

Hi Sylvia, Gill and everyone

I am in a state of anxiety - my heart surgery is tomorrow. It has all happened in the last 2 days - consults with surgeon, nurse, anaesthetist and today lab work, chest x-ray and ecg . My new surgeon (talked to him last Friday) acknowledged that my symptoms indeed were worsening and felt that the surgery should be done sooner - rather than later - he said within a month - then I got a call on Monday and it has been all go. So without going into all the details - I will have replacement of the aortic valve and the mitral valve. It will be a 6 hour surgery and a 6 month recovery period. Hoping that all will go OK - it is a higher risk of death/stroke with having 2 valves done - but he said still a lesser risk than doing nothing.

Please hold me in your thoughts and prayers for a successful surgery - I will update as I am able. Sylvia - you will understand the anxiety level. Sorry if my sentences are jumbled but I just wanted to let you all know.

Stay safe everyone.

Dec 11, 2020 07:13AM sylviaexmouthuk wrote:

Hello adagio,

Thank you for popping in to let us know that your heart surgery is tomorrow. I can certainly understand your state of anxiety, but just keep telling yourself that you are going to be alright. Raymond certainly understands how anxious you must be feeling. He told me that when he was in the ambulance being taken from the RD&E Hospital to the one in Hammersmith, London, that he did not know whether he was even going to go through with it all. Just tell yourself you will get an injection, go to sleep and when you wake up it will all be over. It is good that it has suddenly come very quickly and that the waiting will soon be over.

It is true that you are facing a very long surgery, that it is major surgery, but these kind of surgeries are being carried out all the time now. Raymond's surgery was about four hours and that was on a Friday and yet the following Friday he was back home.

Raymond had the same six months recovery period, so I think that is fairly routine now. He was told to walk as much as he possible could, and not to drive for three months. I know that you will look after yourself and do everything to help yourself.

You know that in the group we shall be thinking of you all of the time and looking forward to hearing from you eventually.

You can do this, adagio. You are strong and determined. Look forward to six months on and the summer months coming in.

That is all for this evening.

Love and best wishes.

Sylvia xxxx

Dec 11, 2020 07:27AM sylviaexmouthuk wrote:

Hello Gill,

I was glad to read that your Zoledronic acid infusion went well and that there was no problem with your vein.

It was good to read that chemotherapy treatment is proceeding in a well organised manner in your hospital.

Like you, I am undecided about the Covid vaccination. Tomorrow I shall try to post some information that I read in last weeks New Scientist. I get the feeling that all has been too rushed. I do agree that there could be a lot that we have not been told. Other countries are being much more cautious. I would like to know what the contents are of the vaccine and since there are three different ones at the moment, shall we be told which one we are getting, shall we have a choice? More about all that tomorrow.

My cousin was not at all well yesterday, was very confused and not making any sense with what he was saying. He was obviously delirious. Only time will tell.

That is about all for now.

Love and best wishes.

Sylvia xxxx

Dec 12, 2020 10:02AM adagio wrote:

Sylvia, Gill and all,

My open heart surgery was cancelled due to emergencies at the hospital - I am disappointed - since I had built myself up for it. Now I am holding my breath and waiting all over again for the next date.

Will keep you posted.

Dec 12, 2020 08:45PM Rosiecat wrote:

Hello adagio,

I can't imagine how let down you must feel. You were mentally prepared to get the surgery over with and had been told that it needed to be done as soon as possible. I've been with you in spirit for many hours and hoped that you would be back on the ward by now. These last minute cancellations happen far too often in the UK as well. Your surgeon probably feels as frustrated as you do.

I shall now be keeping my fingers crossed that you'll have some news very soon. Until then you remain in my thoughts and prayers.

Love,

Gill xxx

Dec 13, 2020 11:52PM helenlouise wrote:

thank you all for your replies. I have had a wonderful weekend with friends and festivities. Feeling much better.

Adagio how disappointed you must feel. Here’s hoping a new date will be set and it will happen. Waiting is the worst. In the interim rest up.

Best wishes to you all xx

Dec 16, 2020 09:03PM sylviaexmouthuk wrote:

Hello adagio,

Thank you for letting us know the new date for your surgery. I do hope it will go ahead and that you will not have any more delays.

We shall be thinking of you and waiting to hear from you.

Wishing you all the very best and a Happy and Healthy New Year.

Good luck.

Love.

Sylvia xxxx

Dec 16, 2020 11:06PM Rosiecat wrote:

Hello Sylvia,

Some good news from adagio for us to start the day with. No more cancellations I hope.

I do hope you have had some better news about your cousin by now. He didn't seem to be at all well when you spoke to him on the phone. Not surprising now that he has Covid on top of his original infection. You must be very worried.

Thank you for the information from the New Scientist regarding the Covid vaccines, it's very much in line with other information I've been looking at. In the midst of a pandemic the trials have necessarily been shorter than for most other vaccines and longer term outcomes are an unknown. However, doctors seem to be very keen to be vaccinated themselves which is useful to know. Covid can be lethal or leave us with serious organ damage and that possibility is with us every day. With this in mind, Michael and I have decided to have the vaccination when it's offered, despite us both having concerns. The Oxford vaccine may not offer those over 55 sufficient immunity or perhaps any immunity at all, percentages and averages don't really mean much to us as individuals. We won't be given a choice of which vaccine is offered.

Here in Norfolk, one in five Covid cases are caused by the new mutation. A New Scientist article online makes it clear that not much is known about this new variant. Viruses mutate all the time, but the latest mutation does seem to be causing more of a stir. So, after all this, will any of the vaccines actually work?

I can't help noticing that some nurses are injecting the Covid vaccine very high on the arm close to the shoulder joint, the needle should go into the middle of the deltoid muscle. I did some online research just to check and it seems this is more important than I had thought. As Mary would know, the shoulder joint is extremely complex and unstable. Injections that are given high on the deltoid can (apparently) result in SIRVA - shoulder injury related to vaccine administration. The damage can be permanent, causing pain, frozen shoulder and even a rotator cuff tear. I think this might be worth knowing. My jab will have to be in the right arm as my mastectomy and partial node clearance was on the left side.

Prime Minister's Questions today. Starmer will ask sensible questions which will be ignored and ridiculed as usual. I do wish Starmer would get angry for once and demand that the Speaker intervene, particularly where there's childish name-calling by the Prime Minister. He isn't funny, he's plain rude. Johnson, like most small children, starts the name calling because he needs to hide the fact that he has no idea what's going on or that he's about to tell a deliberate untruth. In the midst of a pandemic we have this overgrown toddler in charge.

I'm afraid I have nothing useful to say about breast cancer, though treatment in the Norfolk and Norwich University Hospital appears to be going on as normal. However, I have no idea how long patients have been waiting.

That's all for now. Keep yourselves safe.

Love,

Gill xxx

Dec 18, 2020 11:24PM Rosiecat wrote:

Hello Sylvia,

I hope that adagio is safely back on the ward and doing well. I think another cancellation by the hospital would have been irresponsible.

I'm not at all surprised that no one on your cousin's ward is answering the phone. My daughter could never get through when I was in hospital. Some relatives live too far away to visit and with Covid, many hospitals discourage visiting. For them the telephone is the only means of communicating with staff, especially when a patient is confused or on end of life care and not able to say or understand what's happening.

I too heard an item on the BBC discussing the cancellation of vital scans. Surely these could have gone ahead safely in a portable unit outside the hospital. My MRI was done like this and It all felt very safe. It all comes down to money which is very shortsighted. One woman whose scan was cancelled is now stage 4, (not breast cancer), and has young children who need her to survive. Is human life so unimportant to this Government that it can be thrown away so easily? I guess the answer is 'yes' as we now have UNICEF feeding our undernourished children. The sixth richest economy in the world, but vicious welfare cuts have led to children and a great many adults going without food. Jacob Rees-Mogg thinks it's all a publicity stunt! I'm ashamed that this man is a Catholic.

I did go to the Just Natural Health link provided in your last post. I was surprised that 1 in 7 women now get breast cancer. I've never liked milk and always have my coffee black. I do use small amounts in some baking and sauces though. In the UK dairy cows are injected with reproduction hormones to increase their milk production they're also given antibiotics for infections. Doesn't sound very safe at all. Reading through the article anyone would think that there's only one type of breast cancer - ER+. Triple Negative Breast Cancer shouldn't be affected by hormones in milk or HRT, however, the risk to us from the use of synthetic hormones seems to be largely ignored. I can't accept that it's an unknown. Pre menopause I was constantly at the hospital breast clinic with fibrocystic breasts, the consultant breast surgeon and several experienced registrars told me that I must never be persuaded to take HRT. I wonder about the impact of additional hormones on ovarian cancer too.

I can't believe that England will open for four days over Christmas. Especially when much of the country is now in tier 3 and infections and sadly, deaths are rising.

Weather here dull and breezy, not cold though.

Keep safe and well both of you, enjoy the weekend.

Love,

Gill xxx

Dec 21, 2020 03:49AM sylviaexmouthuk wrote:

Hello Gill,

I do agree with you about everything you say concerning the neglect of cancer patients and of course other patients suffering from all kinds of chronic illness. Goodness knows what the toll will be when all this coronavirus nightmare comes to an end, or more likely, in my opinion, we have to learn to live with it as we do with the flu.

I think we have to ignore any nonsense coming out of the mouths of the Tory government and especially the front bench. We are living the nightmare of an incompetent privileged fiefdom that do not have an inkling of the daily lives of ordinary people. I wonder how many of them will break their own hastily put together rules?

I was glad to know that you went to the link Just Natural Health. I am wondering how many other people did? My own breast cancer consultant surgeon warned me about the EGF, a growth hormone, in dairy products.

As for triple negative breast cancer not being affected by hormones in milk, or HRT, it is not quite as simple as that. My oncologist discussed this with me and told me that just because you end up with a tumour status of ER-, PR- and HER2-, that does not mean necessarily that it started with that status, because the receptors mutate.

I think that we should all be staying away from dairy products and that includes cheese and yoghurt. Remember, the dairy business is big and powerful and it will always be outspoken about alternatives. Some say goat and ewe produce is alright because the animals are smaller, so not as affected by growth hormones. Who knows? We just have to make our own choices.

You got good advice about staying away from HRT. I am sure it does not do women any good.

It is good news that Christmas is now only one day. After all, Christmas is only one day, and it is a religious day. It certainly was never meant to be a two week break which it has become over the years. Here in Devon we are still in Tier 2. I think we should be in at least Tier 3. we should all be in lock-down really and not all this mess with different tiers and exceptions within the tiers. I saw on the news that Londoners last night were trying to beat the deadline and rush to lower tiers. If it is a nice day on Friday I am sure our seafront will be busy.

The weather here is very changeable but on the whole wet.

I do hope everyone viewing will read that article Breast Cancer and saying No to milk.

If you remember, I did start posting the beginning of that article by quoting what breast cancer is and how many women get diagnosed etc.

I shall quote a little more in this post to you but of course it is for everyone.

"Not everyone who survives breast cancer has the all-clear forever afterwards. Nearly 9 in 10 women survive for five years or more. According to Breast Cancer Now, however, there are still 11,500 women who die from breast cancer (and about 80 men). Breast cancer can return, sometimes incurably so. 'Unsurvivors' are those who have either survived breast cancer before and develop it again worse, or those who receive a diagnosis too late. Termed secondary metastatic breast cancer, this is when breast cancer cells have spread from the first (or primary) breast cancer, through the lymphatic or blood system to other areas of the body (such as the bones, lungs, liver and brain). Outside of organ-specific additional symptoms, the general signs and symptoms of secondary metastatic breast cancer include:

A constant feeling of fatigue

Incessant nausea

Unexplained weight loss and loss of appetite

Frequent self-conducted breast exams are crucial in maintaining awareness of any change to breasts. The sooner breast cancer is diagnosed, the more chance of survival.

Signs and symptoms of breast cancer include:

A lump or swelling noticeable, either by sight or touch, in the breast, upper chest, or armpit.

A change in skin tone, e.g. dimpling or puckering.

A change in colour, making the breast look red or inflamed.

A rash or crusting around the nipple.

Unusual liquid discharge from either nipple.

A change in the size or shape of the breast."

You will see from these things how important it is for women to be familiar with their breasts and to look for changes, so please do your monthly breast checks and if you have any doubts see your GP. Do not be tossed aside if you feel you do not agree if you are told there is nothing to worry about. Ask for a referral to the hospital.

If you do have a diagnosis of breast cancer, take prompt action.

I do hope all this will help. Keep to a healthy diet, exercise physically and mentally, and do all you can to keep yourself well. Prevention is of the utmost importance.

That is all for today, Gill and once again thank you for your devotion to the thread.

I am sure I speak for all of us when I say we are thinking of adagio and will be so glad when she is able to get in touch. It may not be for a while. Remember she has had valve replacement surgery and with two valves involved.

Hello to Mary, Paula, Kath, Helenlouise, Jags56 (I am still enjoying Tulsi (Holy Basil) green tea). My natural food store was out of stock of Tulsi original. If I have forgotten anyone please post to let me know and update us all, especially the newly diagnosed.

Love and best wishes to you all. Keep well and keep safe.

Sylvia xxxx

Dec 22, 2020 12:01AM Rosiecat wrote:

Hello Sylvia,

I think the information you provided in your last post will be useful to everyone. I had forgotten that your breast surgeon warned that breast tumours could start as ER+ (for example) and mutate to another type of breast cancer. My surgeon didn't have time to discuss the more complex issues of breast cancer and I wish that my consultations had been less rushed. I realise that metaplastic is extremely rare, but to be told by the surgeon who did my mastectomy, that I probably knew more than he did, wasn't what I'd hoped for.

I'm pleased that the hospital PALS organisation has been such a help and that a doctor has been able to answer your questions regarding your cousin's condition. I'm wondering if he is now clear of his Covid infection or if he has suffered any side effects that are likely to be longer term?

I feel that the PM deliberately put off cancelling the four or five days of Christmas get togethers until the last minute just to avoid doing what Starmer has been suggesting for weeks. His ego is quite literally killing people. The country needs a strong, knowledgeable leader to sort out Brexit and keep us as safe as possible during the pandemic. Apparently the Covid vaccine the NHS is currently using will run out in January, although fresh supplies are due to be delivered before then. I don't know if this may change now that all European ports are closed to the UK.

Michael and I will have whichever jab we're offered, though we would prefer the Oxford vaccine, it's cheaper and more importantly, can be stored in normal hospital and GP surgery fridges. I'm hoping that if enough people are vaccinated the NHS will get back to treating all patients in a timely way rather than prioritising those with Covid. Like you, I have concerns that the trials were too short and that there may be issues further down the line that we don't yet know about. However, I think that the benefits outweigh the risks - fingers crossed!

Good luck with sorting out Raymond's medical notes, hospitals seem to send out so many inaccurate letters for GPs to put on our files. I had some of these corrected at the time, or at least, asked for them to be corrected. Given the calls to attend for mammogram when I've just had one or sending me a letter announcing clear result weeks before I'd been for my annual check, I think I'll assume the worst about the state of my records. The whole idea of these very expensive NHS IT systems was to provide 'joined up care', instead we've had chaos from the beginning. Perhaps the system should have been user friendly, rather than too clever for its own good. Doctors are not IT specialists.

The thread is very quiet, I hope there's a sudden surge before Christmas. I think many people may be so worn down by this horrible year that posting is the last thing on their minds. We'll just have to hope that 2021 brings with it a happier, safer world.

Weather here is wet and miserable. Warm for December though.

Keep safe and well.

Love,

Gill xxx