Calling all triple negative breast cancer patients in the UK
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Hello Dolly2019,
Thank you for your recent post with reference to your mum and her triple positive breast cancer. In the past there have been quite a lot of daughters posting in on behalf of their mothers, so I can understand the anxiety and worry that you are going through, especially about the delay in your mother's surgery.
You have not posted details about what kind of breast cancer your mum was diagnosed with and when she was diagnosed with it. What kind of breast cancer does your mum have? The most common is invasive ductal carcinoma (IDC). Obviously she is positive in all three receptors but you do not mention the stage or the grade. Does your mum have a large tumour? This will determine the stage. When was she diagnosed? I see that you joined the forum in July 2019 so I am wondering whether your mum was diagnosed then and if so what has been happening with her since that date. She appears not to have had any treatment. How old is your mum and is this a possible reason for a delay in surgery?
I would think that if chemotherapy and Herceptin has been ruled out because of her heart valve problems, then the only alternative would be surgery and radiotherapy. I do wonder how the HER2+ status is going to be managed without Herceptin.
If that were me I would want to have a good conversation with the medical team and to express my concerns about the delay in surgery.
It is unfortunate that your mum is going through all this when the NHS is being overwhelmed by the coronavirus and we do keep hearing in the media about all kinds of delays in cancer treatment and other serious diseases and conditions.
I saw that you had said you had spoken to your MSP, so I am assuming that you are in Scotland. I do wonder how much influence an MSP has.
You can always ask for a second opinion and if the surgery has to be delayed in your particular hospital, you can ask about possibilities in other hospitals.
I suppose that if this delay in surgery cannot be avoided, then the best option with hormonal positive receptors is to put your mum on an anti-hormonal medication such as letrozole.
I saw that you have posted quite a bit on the triple positive thread, so did you get any useful information from there?
I did have a friend/neighbour who was diagnosed with triple positive receptor status breast cancer and she went through the same standard treatment as I did with regard to chemotherapy, surgery and radiotherapy. It was, if I remember correctly, after this treatment that she had the Herceptin injections for the HER2+ status.
I have other friends around me here in Exmouth, Devon, who were ER+, PR+ but HER2-, who had the same standard treatment as I did but post-treatment went on for five plus years on anti-hormonal medication, such as tamoxifen and/or Arimidex to control hormones.
As far as I know, there was nothing specific for progesterone. I think that usually it is the oestrogen that is the main problem with hormonal breast cancer.
I do think you need a good discussion with your medical team to get this sorted out and to get proper medical advice.
On these threads we can really ony speak of our own experiences, which can be very different. We are not doctors.
My own cancer journey went very smoothly, even though at the time, in 2005, triple negative breast cancer was in the dark ages, especially in the UK. This was why I started this thread after I had had my own treatment.
I did actually delay my own treatment for four months because I wanted to investigate alternatives. I then decided to have the treatment and all went well.
If there is any way that we can be of help, please let us know. You are a fellow Brit and very special to me.
Take care and let us know how you and your mum get on.
Best wishes.
Sylvia
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Hello adagio and Gill,
Thank you for your latest posts. I shall answer them later on today.
It looks like a nice sunny day today in Exmouth.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. The weather here in Exmouth is good as well but the place is a ghost town.
It is true that a mastectomy is not a complex operation. I remember my breast cancer surgeon telling me that it took about 45 minutes and that it was not considered major surgery. Nevertheless for a woman having her breast cut off is a major event for her and must be a tremendous shock to the body. I was always glad during my breast cancer surgery to have a team of women. At least they know what it is like to be a woman.
Like you I am not that impressed with breast cancer websites in the UK. I have never liked the fact that the breast cancer charities raise money by having coffee and cake events and wine and cheese and I do not like the kind of diets for cancer patients that are recommended by the hospitals. I firmly believe in the Mediterranean/Rainbow diet and I tend to follow information from Chris Woollams.
Talking of him, and Cancer Active, I have just been having a good read of his latest email and I was particularly interested in the following items.
1. 20 links between sugar and cancer.
2. Metabolic syndrome and the fact that the article says metabolic syndrome is one of the biggest factors in Covid-19 deaths. Everybody should know what it is, how it affects you and what you can do about it. 23% of adult Americans have and I am sure Britain is not far behind.
3. Fucoidan is a crucial component in seaweed and sea cucumbers. You may have heard of it and it has a number of benefits. This quick read tells you the important things from heart health to anti-viral to cancer.
7. Covid drug performs well.
8. Blog – Dat and Doctors change Covid dynamic. He says the following "I think it is fair to say that my 'Let us keep calm and look at the data' approach has been pretty correct. What I did not expect (Yes – I know I am an optimist) was the total unpreparedness of the health service in the USA and UK for the tsunami of cases. Doctors and nurses save lives, not hospital managers and their managers.
So here is the blog on where we are as of Monday morning. Some things in it will genuinely surprise you.
10. Conspiracy theory.
Have you read any of this yet, Gill?
I do hope all of you will read some of this information.
Last night on Channel 4 I watched and excellent programme at 9 pm entitled Can Science Beat The Virus?
As Britain looks increasingly beyond politics to science for a way out of the current crisis, this one-off debate brings together experts to take part in a straight talking, fact-based discussion with the aim of providing scientific answers to the most pressing questions.
https://www.channel4.com/programmes/can-science-beat-the-virus
Did you watch Prime Ministers Questions yesterday? It was very strange to have it largely virtual. I thought Keir Starmer did a good job and it was relief not to have the superficial clown acting of Boris Johnson.
That is about all for now. I have some phone calls to make and then I need to answer adagio.
By the way, I received a phone call from a friend of mine here to thank me for introducing her to Chris Woollams' email. She had introduced it to a friend of hers and her friend had actually contacted Chris Woollams and was going through a personal prescription with him about her cancer.
Do you think we shall be in lock-down for many months to come? I think it could destroy a town like Exmouth.
Take care.
Love.
Sylvia xxxx
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Hello everyone,
News for those of us in the UK. I've just discovered that during the pandemic, the Spire private hospital in Norwich will be undertaking not only chemotherapy, but cancer surgeries, and all other cancer treatments. It seems that Spire hospitals everywhere and some other private hospitals, have taken over the cancer workload from the NHS. Private hospitals are generally much smaller than NHS hospitals, with less staff, fewer operating theatres, smaller nuclear medicine departments and poor parking capacity. It's going to be very different. Surely, this move will lead to some difficult decisions as to which patients have treatment? Also, I can't help wondering if there will be sufficient capacity for those of us who develop sepsis following chemotherapy - and we know that quite a number of us do. I hope I'm wrong, but I doubt if this idea can work in practice.
Keep well everyone.
Gill x
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Hello adagio,
Many thanks for taking the trouble to pop in and say hello to the group. We do, in fact, have two Marys in the group now, the other one is Maryjv from the US also and who is going through treatment.
Thank you for thinking about Raymond. He is now nine weeks from surgery and is doing well. He is getting back to normal walking.
It looks as though we are all living the same kind of life under lock-down. I have no idea when it is going to end, but then nor do the experts. It has been quite difficult adapting to life after Raymond's surgery, giving up the car, and dealing with everyday life under lock-down.
I am concerned for cancer patients going through treatment with the coronavirus weighing down upon all of us. I shall be very surprised if a vaccine becomes available any time soon.
I have just been reading how they think that immunotherapy is a revolution against cancer. In the magazine I am reading, entitled 'force matters' (the magazine of FORCE Cancer Charity) it says that targetted treatments such as immunotherapy are being developed at many cancer sites. "Immunotherapy which uses a person's own immune system to recognise and attack cancer cells, has transformed the outlook for some cancers such as lung and malignant melanoma".
I am not sure how it is doing for breast cancer.
FORCE is the cancer charity in the grounds of the RD&E Hospital where I had my breast cancer treatment.
I was interested to read that FORCE had raised money to buy a lymph scanner machine that will help in the treatment of lymphoedema. It says that lymphoedema affects more than 200,000 people in the UK and there is a particular risk after treatment for any cancer where lymph glands are removed. Patients who have surgery for breast, gynaecological, genitourinary and skin cancers are particularly at risk. I am lucky that my lymphoedema does not bother me that much.
Sending greetings and love to you over there in British Columbia, Canada.
Sylvia xxxx
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HI, Gill
I'll try this again, this mess-up seems to happen more on my posts to you for some reason. I was trying to say I also miss going to Church, last Sunday I got distracted several times, paused the TV, and then forgot to come back for a while. That's a whole other problem, my mind is so scattered. It seems like it stems from having no real routine, all appointments cancelled, the time of year meaning many duties to take care of outside, and then there's the constant noise of all the virus drama.
Another thing that is scrambling my brain is the fact that I started a dog search, and oh boy what a circus that is. Unless one is privy to knowledge of a home breeder, it requires online searching and messages coming in and going out. Right now I am ready to shelve the whole thing. There are many, many unscrupulous dog breeders, and the challenge is to find reputable dog breeders that breed the kind of dog one wants. I learned that dogs are a hot item right now, and the popular breeds are selling like hotcakes. I guess I never realized the dog industry is so huge, I have had many animals in my life, but most of them just turned up at my door or I got them at a shelter.
The state I live in is getting ready to begin to open up in about 2 weeks. Meaning restaurants can open, but with limited, and spaced out tables. Grocery stores and garden centers have been open all along, but other Stores will open then, but I suppose the number of people and their spacing will have to be observed. The grocery stores have already started doing that, it requires more employees to keep an eye on things.
I'm glad you got some yeast, that has been a rare item.
I hope your digestive system is calming down. Do you think this is ongoing or will it eventually get back to normal? I find I don't digest some foods well now either, some I can eat a litte bit, others I steer clear of completely.
I am going to try and send this before it disappears.
I will talk to you soon, love
Mary
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Gill
That time I copied and pasted in a new space, and it went through. I need to try the new button above "Copy link for this post."
Mary
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Hi Sylvia
I hope you and Raymond are having a very nice weekend, as nice as it can be in the strange world we are in now. I imagine Exmouth is still very quiet, and from what you said, it's likely to be that way for a while.
Here we have 50 states, with 50 governors. When people all over watch TV, what they are shown on the national news here is usually the state, and mostly city, of New York. The rest of the country is not the same. So now the governors of the other states are putting out guidelines for opening things up, broadening areas that are already up but mostly maintaining for now the things like 6-ft spacing for all and mask-wearing in some places. Many businesses will reopen with having to find ways to operate within those parameters. Some businesses have never closed. The business I am involved in is one of those, since the products we make are important to construction, it fell under the umbrella of "essential". We have been operating with strict cleanliness measures and guidelines that have to be approved regularly by the Local Health Department. We have hundreds of employees and so far have only had 2 employees that tested positive. They were not connected. One of them was quite interesting, he went to his doctor complaining of sinus problems, the doc sent him for a Covid19 test and he was positive. He self-quarantined and 2 weeks later went and got re-tested. He is still positive and he has never felt ill. The sinus-like symptoms have disappeared and he didn't get anything worse. He was told however that he has to stay quarantined until he has a negative test, because they think he could still be a carrier. The other case we had was a younger woman, and she also got sicker, with fevers and coughing.
To put things in a nutshell, I think it is beginning to be generally realized that we are going to have to learn how to live alongside this virus for now, without all being hunkered down in our homes. It will be more individualistic, with older people still staying in if they are not comfortable being out and about, and businesses having to adjust to working within guidelines. It probably won't be a smooth transition, but hiding while waiting for a vaccine is just not tenable for the long term.
I looked at the Chris Woollams' post you linked to, I agree with this, and it fits in with the symptoms I was just describing of the man I mentioned above. I agree with Chris that, while it is a serious problem for many, it is also being turned into a panic-demic by vested interests. I would add that for us it is also a Presidential election year, so it almost seems as if the opposition party is trying to drag out any bad news to try and affect this election. It's just awful, I have given up on turning on a newscast to learn anything, it is all sensational, with much of it conflicting and confusing the issue farther. Chris also touched on something I had heard recently, while a patient may actually die of a pre-existing condition, if that patient is later found to have Covid, they are counted as a Covid death. That was openly admitted here a few weeks ago. Thus the numbers are skewed, and they are already skewed by the fact we don't know how many people actually have had this virus. The Hydroxyquinolone is another issue, it was first widely brought to notice here because the President mentioned it in his nightly Covid report. Well, it could not be allowed to be anything good if he mentioned it, (in the eyes of most of the media), so immediately a flurry of doctors were on TV saying it was dangerous, couldn't possibly be used and on and on ad infinitum. It is not suggested for people who have heart problems, and can be dangerous if too much is taken. So now it is in clinical trials, along with a promising antiviral, and we'll see what happens next. There are many, many anecdotal reports of people who were seriously ill who asked their docs for the hydroxyquinolone and lived to report it saved their life. Nevertheless, it became a tempest in a teapot.
Well, I've gotten long-winded here, it's a good day for it because it is raining and windy outside. I hope your day is better, I am going back to your Exmouth seafront when I sign off and see what it looks like there.
Love to you and Raymond, Mary
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hi Adagio
I think we are all so upside-down right now it's not hard to be down about it. Here in my area things are going to begin to open up. I think that my life won't change much for quite a while, and everyone is supposed to keep up the distancing. I think everyone also realizes that as things open up, there will be more positive cases that will appear. It's a very stressful time. Many states will not open up for some time, and even in our state the 2 large cities will keep their lockdowm orders in placE because their numbers are high.
I wanted to ask how your husband is doing. If you recall, my brother suffered much the same injury as did your husband, while he was swimming on your vacation. My brother greatly improved, after having lost the use and feeling in arms and legs. But now things have somewhat changed. He had arthritis in his wrist before his injury, and now this wrist pain has almost crippled him, it has gotten so bad. His fingers and hands sometimes swell and get very stiff and unusable. I think the nerve damage has exacerbated his arthritic symptoms, and it has also made his legs weaker. Just like mine after the chemo when the neuropathy kicked in. I feel for him, it's a difficult problem for someone who was so active. I hope your husband has had a smoother recovery.
I have had a very lazy day, tomorrow will be our only sunny day of the week, so l hope the laziness will pass.
I hope things get better for all of us soon, take care, Adagio. And I'm glad you also lost weight, makes me feel normal!
Love, Mary
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Hi everyone
Hope u are all well? Mary in response to ur query re swab being positive for quite a while we are finding that quite a common occurrence. People with mild disease isolated at home are not asked for a negative swab before clearance in Australia. Only if they have severe disease or are a health care worker they need two negative swabs 24 hours apart. If they have mild disease they must be 72 hours without symptoms before isolation is released. We are following up with serology at later dates now to determine antibody response to disease. Swabs are used only in the acute phase and many people do not have severe disease.the majority of those infected will recover (80%) unless they are elderly or immunosuppressed. Australia has had no new cases for the past 3 days and things seem to be calming down. We have been told to watch for a second wave in November tho so need to be vigilant.
I've just been on a morning walk with my daughter to the Line of Lode which is in the middle of the city of Broken Hill. It is the first mine sunk by (BHP) Broken Hill Proprietry and has so much history . The biggest deposit of silver lead and Zinc the world has known. Commenced in 1880 and still going strong! Thought u might want to see some pics. The memorial my daughter is walk through is a tribute to all the men who died whilst working on the mine and the two railway carriages are a memorial to two young miners who are still buried under a rockfall in the mine. They were never able to recover their bodies. The tribute on the plaque is quite moving
Much love
Kath
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Hello Mary,
Thank you for your very interesting post.
Yes, Exmouth is very quiet and it all seems so abnormal. Our apartment complex is completely silent.
Thank you for your interesting information about how your news coverage concentrates on New York and President Trump's news briefings. I do think that there will be an opening up in the States and we shall probably follow. The news here is that Prime Minister Boris Johnson will be back at work tomorrow and some decisions may be made. He has a very weak cabinet and they have not been up to par on their own. They need little ditties to recite otherwise they cannot function. They were all relatively unknown until Boris came in and the strong people in the Conservatives seem to have disappeared.
I can see from your post that you are involved in a very big business and that it must be time consuming.
I agree with you that we are probably going to have to live alongside the coronavirus. A vaccine will not be just around the corner. I think here the powers that be are going to try massive testing according to what I heard on the radio this morning. It was something about sending out loads of letters asking for volunteers to be tested. They want about 20,000 people. I think the volunteers will then be given the test swabs to send back. I do not know if this will work. I fear there may be mistakes made. As for the other test, the blood prick, I do not think that is reliable. We shall see!
I was glad to know that you are still following Chris Woollams. I do think his information is reliable. For most people the virus is not life-threatening and a lot of those that do get serious problems and die, a lot of the time they have other very serious health problems. If they got flu they might well die. As Chris Woollams said, and as I have heard on the news, if an ill patient is also found to have the coronavirus they put this down as cause of death. I do not think we shall ever be told the true number of people that have died of the virus. Today we are being told that the death toll has gone to just over 20,000 but I think, from what I have read, that it is more like 40,000 if all the deaths from nursing homes etc. are added on.
There is a lot of information being written about hydroxyquinolone. It seems that that this has cured certain patients quite quickly. Apparently it is used in combination with an antibiotic.
The weather here in Exmouth has been dry and fairly mild. It has been a very strange April and, so we are told, the driest on record. We do need rain. I am now wondering whether we shall get it all through the summer.
I shall be so glad to get back to normal. The past four months have been quite stressful and not very relaxing. Raymond and I will be glad to get back to a better routine. It is now ten weeks since he had that major surgery and the wound in the leg still bothers him, but he has to persevere. Perhaps when we do have some kind of normal days we can arrange with you to wave to you from the town centre or the place along the seafront. We have not been to either in months.
That is about all for now.
Love from both of us.
Sylvia xxxx
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Hello Kath,
Thank you for your post and for the information about how coronavirus is being dealt with in Australia.
It is good news that things seem to be calming down in Australia and let us hope that continues.
I was wondering why November has been indicated as the time for the second wave. What is supposed to be happening during May, June, July, August, September and October? How will people know whether they have flu or not? I feel that over the past months flu and the coronavirus may have been mixed up.
Thank you for those interesting photographs of the Line of Lode and for telling us the history.
Keep safe and do not overwork. If you have any nice photographs of autumn please post them. I think we all need cheering up a bit.
Love.
Sylvia xxxx
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Hi Sylvia Australia is just going into our winter months now and already had our first wave with the epi curve flattening very rapidly. People with Covid have also not been as sick as expected. Flu uptake is the best it has ever been and although many of the isolation requirements will be relaxed social distancing will be maintained.
The northern hemisphere has not yet had its peak which I'm told will be around August and Australia will follow as we go into summer. Will be interesting to see if there is a vaccine by then
Cheers
Kath
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Thank you for that detailed response.
Yes I’m in Scotland and my mum’s Cancer is Er+ PR+ and Her2+. It’s grade 3 and in lymph nodes in armpit. We don’t know how many or if there is any extracapsular extension because they haven’t operated!!!! But we do kniwvthe tumour was either 1.8 cm or maybe 2.1???? I of course say this because, we we never get the same info from one appointment to the next.
They are saying because she has a weak heart valve that they must start with Letrozole first? This is what I’ve been questioning.
Initially we were told that any operation she has would be a local anaesthetic because if heart.
That is my question. Why mess around with Letrizole for two months when an operation would be better.
I’m guessing it’s Covid. Although they are saying no.
Anyway today we got an appointment with the surgeons for Wednesday. I’m still thinking that they’re going to postpone this op. There is to be 3 specialists there to ‘explain’ everything. That’s what makes me think they’re still going to put this off.
Anyway. I have gathered questions to ask and am going to ask for everything to be put in writing so we have it on paper.
I’m going to ask about the possibility of mum getting Herceptin maybe later after a heart valve op? That had been suggested at one point.
It seems like so much going on.
My mum is now deeply upset with all of this. It’s been 11 weeks since she first saw her doctor and this stalling is not right
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Hello Dolly,
Thank you for your post and for giving more details. I was very glad to read that you have an appointment for Wednesday with the breast cancer surgeons and I do sincerely hope that you will get the answers you and your mum want and need at that meeting. I was also glad to know that you have prepared some questions that you want to ask. It is useful to take your own notes at this meeting if you can, so that you can refer to them afterwards.
It sounds to me as though the surgeons (or specialists) may have concerns about the surgery because of your mother's valve problems. Surgery does take its toll on people, especially if they are older. This is all the more so because they want to do the surgery under local anaesthetic. This makes me wonder whether they are thinking about a lumpectomy rather than a mastectomy. Do you have any information about this, especially because lymph nodes are affected?
Try to deal with everything in order. Try to sort out the surgery and then think about sorting out whether Herceptin can be given later, and possibly after a heart valve operation. My understanding is that heart valve replacement surgery is very major surgery.
This will and must get sorted out. Take a deep breath and keep as cool as you can. It pays to be assertive rather than aggressive.
I shall be thinking of you on Wednesday and hoping all will go smoothly and that you and your mum will feel more reassured.
I think that sometimes anti-hormonal medication may be tried before surgery.
Take care.
Best wishes.
Sylvia xxxx
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Hello Kath,
Your work really fascinates me. It must be so interesting. Please keep us up-to-date. Here in the UK there were over 300 more deaths from Covid today. The Prime Minister, Boris Johnson, was back at work and said he is not ready to relax the lock-down at the moment. There will be more announcements on May 7th. We already have over 20,000 deaths and that does not count the high number of deaths in care homes or deaths from other illnesses of which there are probably many.
Raymond and I walked into the town centre of Exmouth today and it was like a ghost town and very depressing. We had to queue outside the bank for ages and were being allowed in only one or two at a time. It was exhausting. Very few shops were open and there were long queues outside these with markers on the pavement to ensure social distancing. We walked back home very slowly as we were tired and it is uphill. I did not want Raymond overdoing things.
We are now hearing about children here getting ill and we are being told it is coronavirus related. They are getting serious illnesses. I wonder what being shut away for five weeks here has done to them. They will have had no air or sunshine and probably have vitamin D deficiency.
That is about all for now. I am missing my friend here who is stuck in Perth, Australia since leaving here in late February. A card has just arrived from her saying that the way things are going she will not be back until June. The card is very pretty and shows Cottesloe Beach, Perth, Western Australia. The sand and sea look lovely. I do miss her as we get on very well.
One thing for sure, I am going to get my flu jab when the season comes along!
Thinking of you.
Love.
Sylvia xxxx
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Hello Dolly,
Your mother's case is so complicated, it's hard to be clear regarding the best way forward. However, decisions need to be made very quickly now, she's waited long enough already. I'm in no way medically qualified, but breast surgery under local surely has to come first? I've just read that due to covid-19, all operations have been postponed except emergencies, however, some cancer surgeries are going ahead. Clearly, patients will need to be tested for the virus prior to surgery. Since your Mother's cancer has node involvement (if I've got that right), I would want to get on with it asap and would be pushing for the lumpectomy (?) at tomorrow's meeting. You will then have some breathing space for thinking about heart valve surgery - if surgeons consider it an emergency, you would have a good case, if that's what your mother wants. I think recovery from valve surgery takes time and the operation itself is complex.
I wish you luck for tomorrow. Keep a cool head and take notes. You could ask if other hospitals in the area are able to perform the lumpectomy quickly.
Gill x
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Hello Sylvia,
I agree, it would have been good to have a female team when it came to mastectomy. My female radiologist told me that I had cancer immediately following the ultrasound scan, while I was still on the table. I'd watched the whole thing on the screen and having had so many breast scans for fibrocystic disease over the years, I could see this was different. I appreciated her telling me quickly and she was very kind. My private surgeon, male, had zero empathy. Neither did he explain much or answer questions sensibility during my post surgery consultation. I had the impression that he wasn't used to women questioning him, his ego probably created a mental block. He did make a good job of the mastectomy though. The cancer support nurses just didn't have enough time to be effective, so it was down to this thread and online research to enlighten me.
I have read most, but not all of last week's Cancer Active. The twenty identified links between sugar and cancer makes you wonder why the Government's isn't more robust, especially regarding fizzy drinks. A little extra tax on these toxic and very addictive drinks really doesn't cut it. My children didn't have them and my grandchildren don't. In fact they don't even ask about them. The amount of sugar they contain is staggering. The link between metabolic syndrome and Covid-19 deaths has been highlighted many times in the last few weeks. I hope people and especially parents, take note.
Chris Woollams did brighten my day when he mentioned Remdesivir and I looked it up the same day. However, it had already failed its first randomised trial. There's no evidence that it will help coronavirus patients at all, but Japan has just passed Remdesivir for use and intends to begin using it. We shall see.
I noticed that there's an article from Bradford hospital on the BBC news website. Two colorectal surgeons are saying that while some cancer surgeries are being done, they are not diagnosing many new cases. This is a common cancer, so very worrying. It sounds like there will be a cancer time bomb ready to explode when the current crisis is finally over.
I doubt if lock down will be over until June at the earliest. It depends on what Dominic Cummings decides I suppose. Boris appeared yesterday looking suitably dishevelled. I watched as Keir Starmer quietly demolished Dominic Raab last week. His dignified, forensic approach is in sharp contrast to bumbling Boris Johnson's theatricals. I will be worth waiting for. I hope the extraordinary presence of Cummings at SAGE, (Scientific Advisory Group for Emergencies,for those outside the UK), meetings is going to be addressed. No wonder the science is being ignored or manipulated by Government. Apparently SAGE warned about the danger of coronavirus hitting care homes weeks ago. It looks as though someone 'overlooked' expert opinion and the death rate is now horrendous.
We can only hope that a coronavirus vaccine or treatment can be found. It seems a long way off though. It's a worrying time for everyone, especially cancer patients. The NHS really need to put more effort into resolving this. Cancer won't wait and the timing of diagnosis and surgery is critical. It will be interesting to hear what the doctor's offer as the way ahead for Dolly's mother. What an awful dilemma.
I've been wondering how Maryjv is getting on. We haven't heard anything for a while.
It's been raining all day here, the earth was very dry so we needed it. It's cold enough for us to have the logburner on, although this isn't unusual for this time of year. Naturally, the wet weather will bring the slugs and snails out to eat whatever seeds are coming through.
Best wishes to both of you. Keep safe and well.
Love,
Gill xxx
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hi guys,
I just realised that this forum is for triple negative in UK! I misread this!
Just back from hospital today and long talks with two of the professors there. They took lots of time to explain everything and it seems that my mum has a swelling in the breast due to lymph fluid snd that’s why operation can’t happen first.
Also her heart valve problem needs fixed first before any op and after that they might still do chemo and herceptin.
It seems there are lots of different ways to treat this and it’s not quite as simple as we first thought.
My mum feels much happier since hospital talk today and they are now moving the heart referral on pronto.
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Hi Dolly,
Very glad that you and your mum are much clearer about the way ahead. It must be a relief to finally have a plan.
At first it was a surprise to see a triple positive post on the triple negative thread, but the problem your mum had - breast cancer, a heart problem and no clear plan, could have been the case for any breast cancer subtypes. We'll all have been following your story and hoping you would get the answers you needed at last. It would be good if you continued to let us know how your mum is getting on.
Good luck with everything.
Love,
Gill xxx
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HI Maryna,
Thanks for enquiring about my husband! First, I would like to say that I am sorry to hear that your brother is not doing so well at the moment - it is so difficult and especially challenging for those who are very active.
Peter (my husband) is doing OK. He still has the tingling in the fingers of his left hand and gets shooting pains going up his arm to his shoulder and neck - this is not a constant pain - rather intermittent , and comes at random times. His left hand does swell up every once in a while. So there is still something not quite right - but, thankfully, he can do all that he needs to do and he does not have to take pain medications. It has been over a year now since his accident - so it would seem like this is his new normal.
Glad you are keeping busy - I am trying my hand at painting on canvas with acrylics - something I have always wanted to dabble in - so now seems like a perfect time while we are all waiting for the virus to move on. I would have to say that there is much more involved with painting than I ever imagined!!
Stay stay.
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Hi Sylvia,
Good to see you back posting on the forum - sorry about those long line ups - and that seems to be the norm here as well - it is tiring. Raymond seems to be doing very well, though.
One thing I am very curious about in your post is mentioning that you will be getting your flu shot - perhaps I have misunderstood your previous posts, but I thought that you had said you would not get a flu shot again after what happened last time - may I ask why you have changed your mind? Of course, we are all entitled to change our minds - I have never had a flu shot - and I am naturally curious why people choose to have it? Hope you don't mind me asking?
It must be challenging for your friend stuck in Australia - hopefully she is with really good friends or family - and that she stays safe.
Take care,
Maureen
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Hello Dolly,
Even though your mum is triple positive, you are quite welcome to stay on our thread. Most of the standard treatment is the same, except for the fact that, if you are HER2+ you need the Herceptin and that after standard treatment, if you are hormonal there are anti-hormonal treatments such as tamoxifen and/or Arimidex etc.
I was so glad to know that you had a good appointment with your consultants yesterday. I was glad to know that the consultants took the time to explain everything in a way that you and your mum could understand. That is the way it should be.
Were you told how the swelling in the breast due to lymph fluid can be treated?
It is understandable that the heart valve problems need to be fixed before any surgery. Heart valve surgery is a major operation and the surgery is long, and then needs months of recovery. My husband recently had coronary bypass surgery for blocked arteries and that was about a four hour operation. Valve surgery is probably longer. Are they planning to do this as urgent because of the breast cancer? If not there could be a long wait. This is something you need to sort out. Someone we know had his heart valve surgery delayed at the last minute because he needed dental treatment and they would not operate before this was done.
I was glad to know that your mum feels happier after the talk at the hospital and I hope she will get a quick referral for the heart surgery.
Did you happen to find out what kind of breast cancer your mum has? There are different sorts but the most common is invasive ductal carcinoma (IDC).
Sending you and your mum love and best wishes. She will get through all this.
Sylvia xxxx
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Hi Mary,
Apologies for jinxing your posts to me. I find it happens most with the longer more thoughtful posts. Sod's law.
My slug battles are ongoing, but I might have found a solution to stop them finding their way into tubs and planters. Apparently, a layer of petroleum jelly around the outside top breaks the slug's grip, causing it to fall off. I'll let you know the results.
I wonder if you have any more news on your weight loss? It's always a concern when it happens for no obvious reason. Perhaps the lack of socialising and spending long days out working on the farm might explain it? It's very hard to stay in the house with all this going on, I find myself checking the news far more often than is good for me. I miss meeting up for coffee with friends, just stopping to chat to people in the village, dinners out, shopping. We Skype the grandchildren, but being so tiny they become bored very quickly. I'm not a fan of Skype etc and find the telephone better for keeping in touch. I like Sylvia's idea of arranging a time so that she can give you a wave on the town's webcam.
Sorry that you haven't been able to find a dog. You have a lot of land and could offer him or her a good life. They're such faithful companions. Our dog died years ago and I'd like another, but Michael won't agree. This is despite him making a huge fuss of any dog he happens to meet in the village. Maybe I'll take matters into my own hands when this horrible time is over. I'll have to find one that doesn't mind cats running the place. One of our cats is a huge bully, so she might be a problem for a more timid dog.
The news about Covid-19, possible treatments, possible vaccines, tracking, testing doing lock down, not doing lock down changes every day. It's chaotic. This also applies to cancer diagnosis, cancer surgery and treatments. It seems that America, at least in some states, has a less strict lock down than the UK. Our restaurants are closed but some will deliver takeaway meals. I was surprised to hear about restaurants opening but spacing out tables in parts of America. They'll be restaurants, cafés and shops that will never reopen here. Some of the very well known large department stores are having difficulties too. It would be true to say that they were having problems before coronavirus, but the pandemic has been the final straw. So many people prefer online shopping, but getting dressed up, going into the city, seeing new faces, sharing small talk etc is so important, it's part of being a human being. We are, after all, social animals. In many parts of England, when shops close, they are either taken over by charities or bought up by developers for housing.
My hair is growing well, except at the top part of both sides. A good cut would help and the thin areas could easily be disguised. So, I've gone from dreading going to the hairdressers to looking forward to getting on with styling it. The hairdressers are closed here for the foreseeable future and when they do reopen appointments are going to be as rare as hens' teeth.
That's all for now.
Stay safe and well.
Love,
Gill xxx
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