Share with others who have ER-/PR-/HER2- breast cancer.
Posted on: Sep 12, 2010 08:43AM - edited Feb 21, 2021 10:04AM by sylviaexmouthuk
With so many forums and threads on this site to go through for information, I thought it would be a good idea for all of us in the UK to form a forum specifically for us, and to give our details and experiences in a compact manner. Anyone else in the world is welcome to join in.
I was diagnosed with a very large tumour, triple negative, in 2005. I had pre-adjuvant chemotherapy, epirubicin, cyclophosphamide, and then docetaxel, followed by right breast mastectomy with removal of seven lymph nodes, only one affected, the sentinel node. I had three weeks of radiotherapy plus boosters. I had very few side effects from all of this treatment, except fatigue. I am still in the clear after 15 years and 08 months. I still live with fear of recurrence or spread, but I live a normal active life. If I can do it, so can you!
I would love to hear from anyone in the UK or anywhere else in the world. It would be useful to find out how many of us are affected with triple negatives and to share information, comfort and support.
Posts 15211 - 15240 (15,342 total)
Jan 3, 2021 06:44AM helenlouise wrote:
great pics Kath. Love the grandies dressed up. Assume it’s Broken hill and is that a camel?
Thanks for all the good work on contact tracing and good luck for your studies this year.
Jan 3, 2021 09:54AM Rosiecat wrote:
Good luck with keeping Covid under control. Australia has done extremely well so far. Planning ahead and a well organised track and trace system seems to have been key, despite the political point scoring. The UK began vaccinating on December 8th, Prime Minister wanted to be first! The vaccine roll out has now degenerated into the usual chaos. The great plan seems to have been 'there is no plan' right from day one.
Your grandchildren look very cute. We didn't see ours this Christmas as we're in tier4 and everyone agreed that it was too risky. The UK has so many Covid infections and deaths that we're pinning all our hopes on the vaccine. Normality seems a long way off.
Good luck with Covid tracing and the rest of your studies.
Jan 3, 2021 01:56PM adagio wrote:
Hello Sylvia, Gill and everyone!
I am alive! I am finally home - it has been a rough ride so far - I am very weak and oh so tired. I sure hope it will be worth it all in the end. I will go into a few of the complications I had after surgery in due course - but I have no energy and am still in a fair bit of pain. The actual surgery was a success - but my body did not respond to the pharmaceuticals very favourably. All will work out OK - with time and lots of patience.
Will tell more as I am able.
Wishing everyone a New Year filled with courage, hope and a sprinkling of joy.
Jan 3, 2021 04:14PM - edited Jan 3, 2021 04:22PM by sylviaexmouthuk
What wonderful news to find your post on the thread this evening. This is the news that I and all of your friends here on the thread have been waiting for. Well done.
You must be so glad to be back home with your family and you will slowly but surely get back to your normal self.
After such a major operation you are bound to feel weak and tired but this will gradually go and you will feel good again and feel that it was all worth it.
I am sure that you have been told by your medical team that it will take a long time to recover and that you must do it all gradually and take all the time that you need. Raymond was told that it would take at least six months and perhaps more, so just be very patient and do what you can. Remember your surgery was longer and more complicated and that it takes longer to recover from valve replacement surgery. I am not surprised you have no energy but it will come back.
The great news is that the surgery was a success. I am not surprised that your body did not respond very favourably to the pharmaceuticals because your body was not used to medication. It was the same for Raymond. He hated all the medication pumped into him during four weeks in hospital and all the ones he was told to take when he came home. No doubt you will be on some of the same medication. He did not like some of the side effects and stopped taking some of them on his own initiative. He is now taking just a low dose beta blocker and low dose dispersible aspirin. His main problem is the heaviness he feels in the leg. His friend from the hospital who had valve and artery by pass surgery was taking the same kind of pills and is still recovering and his surgery was over six months ago.
Take your time and you will be fine.
When you feel like it, come to us and we shall all give you all our support and you can talk to us about anything you like that is bothering you or anything that you want to get out of your mind. We are here for you. A problem shared is a problem halved.
Sending you all my love and best wishes for a happy, healthy 2021.
Jan 3, 2021 04:20PM sylviaexmouthuk wrote:
It is so good to see you back on the thread as I know you are very busy. I really enjoyed looking at your photographs and I especially liked the photograph of your three grandchildren. They looked so smart.
Is that a camel or not? I looked at it and said that it looked like a camel. Raymond said no. Then I saw that Helenlouise said it looked like a camel.
I shall write more tomorrow about Covid and vaccines. I do wonder where we are going with it all in the UK and I do wish our Prime Minister and his government would stop all their boasting. They have made so many wrong decisions.
Wishing you a happy, healthy New Year.
Jan 4, 2021 02:38AM sylviaexmouthuk wrote:
Hello to our group,
I noticed that Debra (InspiredbyDolce) who posted here in the past from time to time, has posted on TNs to say she reaches 9 years of survivorship today. You might want to congratulate her and read her interesting post.
It is also Raymond's birthday today!
Hello Valstim, I was thinking of you and hoping you continue to do well. We are always thinking of you and of all those who pop in from time to time to say hello.
Best wishes to all from a very cold Exmouth.
Jan 4, 2021 06:17AM Rosiecat wrote:
What a relief to hear from you and what a good start to 2021. Thank you so much for letting us know what's happening. I'm not at all surprised that you remain very weak and very tired after such major surgery. You are only at the very beginning of your journey back to health. The psychological impact shouldn't be underestimated either, I hope this will be addressed by the medics.
As you say, it will all work out, but needs a lot of time and patience, probably the more so since you've experienced problems with medication. I do think that your physical fitness helped you to get through the surgery and will help in your recovery too. Well done for having the courage to go through with the operation at all, it was the right decision without a doubt.
I'll keep you in my thoughts and prayers.
Wishing you a peaceful New Year.
Jan 4, 2021 07:08AM Rosiecat wrote:
Thank you for all the work you do in keeping the thread running and all the useful information you pass on to us.
I know very little about when the vaccine will actually be available, the schedule is in place, but doesn't mean much if the vaccine hasn't yet arrived. It pains me to say this, but Jeremy Hunt, dreadful Health Secretary that he was, would have been far more efficient at organising the roll out than Matthew Hancock has been. The Prime Minister has promised that tens of millions of vaccinations will be done in the next few months....... He has almost certainly made that up.
My daughter had the Pfizer vaccine two weeks ago so that she can get on with administering the jabs, but these are arriving piecemeal which makes the whole programme a logistical nightmare. Her second vaccination has been cancelled. The Oxford vaccine doesn't confer as much immunity as that made by Pfizer, so the second jab after 3 weeks seems crucial to me. I'm hoping for Pfizer, but won't have a choice.
I'm not at all surprised that cancer and other vital surgeries are being cancelled again as Covid patients take over hospitals. I can't imagine how frightened and frustrated people needing surgery must feel. It was inevitable that Covid cases would rise during the Winter so why allow people to mix over Christmas? This decision has made the situation so much worse and is already costing lives.
It was so good to hear from adagio, I was becoming more worried as time went on. As you know from Raymond's heart surgery, recovery takes a lot of time. Whist surgery was essential for both Raymond and adagio, the decision to go ahead isn't taken lightly. It's been a very anxious year for you and Raymond and adagio and her family, I'm hoping that this year, even with a pandemic raging, will be much happier and safer for you all.
Keep warm and well in a very cold Exmouth.
Jan 4, 2021 07:43AM helenlouise wrote:
Good to hear from you Adagio, wishing you a speedy recovery.
Happy birthday to Raymond 😊.
Best wishes to you all
Jan 4, 2021 07:59AM Rosiecat wrote:
Hello again Sylvia,
Helenlouise's post just reminded me. Happy Birthday Raymond! Hope you and Sylvia enjoy a peaceful day and perhaps some chocolate to celebrate. Montezuma's 100% of course!
Jan 5, 2021 06:24AM sylviaexmouthuk wrote:
Thank you for your birthday greetings for Raymond. It was not exactly a peaceful day. I spent quite a lot of time on the phone with reference to my cousin, trying to sort out quite a lot of mess. Everything seems chaotic because of the Covid virus.
We did have some 100% dark chocolate in the evening but we usually have a couple of squares regularly.
I think we shall have to have a proper birthday if and when we get back to a normal life.
Jan 5, 2021 06:27AM sylviaexmouthuk wrote:
Thank you so much for popping in to wish Raymond a happy birthday.
What is the latest news about Covid in Australia? Here in the UK we are back in lock-down.
Jan 5, 2021 06:55AM sylviaexmouthuk wrote:
Hello Gill again,
Thank you for your kind words.
Here we go again, back in lock-down, thanks to Mr About-Turn!
I also wonder when people will actually get the vaccine. I think we are back in Test and Trace land and once again we have that magic word Capacity!
I did hear on the radio this morning a woman explaining that we do not really know how infectious this new variant is. She explained that when we are given the daily figures of new cases, the new variant cases are mixed up with the old variant, when really I think they should be differentiated. From another source I heard that on December 29th the number of new cases was 80,000 but we were certainly not given that number. I do not think the number of deaths that we are given is correct, either. My mental arithmetic differs and I think that either the calculator or the algorithm is in need of repair. Someone said this morning it was going to be in excess of 100,000.
I was interested to know that your daughter had had the Pfizer vaccine two weeks ago. I am not surprised that her second vaccination has been cancelled. Why, oh why, does this government mess about with everything? The instructions about the Pfizer vaccination were clear and yet our government decides that they will give only one and then wait twelve weeks before giving the second. This cannot be right. I think once again there is a problem with supply. I also think it might be decided to use the Oxford vaccine because it is cheaper. Never mind that it may not be as effective. They will probably end up doing mix and match, even though the advice is not to do this.
Raymond and I have not heard anything about having these injections and we are dubious about the way it is being done. I certainly want to know what injection I am having if I get a letter about it. I am not the kind of person to accept any kind of drug without knowing what it is and possible side effects. I take no medication at the moment.
I do not think it is right that terrible diseases are being shunted to give way to Covid. Imagine you are a cancer patient, newly diagnosed and you are not being given treatment urgently.
It was indeed good to hear from adagio and I hope she will be able to keep in touch from time to time. I am sure she will make good progress.
I do hope this very cold weather will go away. I think it is unlikely that Covid will go away any time soon and we may have to live with it like we do with the flu. I do think it is wrong that the vaccines are being promoted as the great saviour. People need to listen carefully and to retain that the vaccine is to keep people from becoming so ill that they need to be hospitalised. It has not been said that it will stop spread. From the beginning of this pandemic I think everything has been about the government trying to save face from all its cuts to the NHS as far as funding goes and all its cuts to beds. The NHS was in trouble before the pandemic began. Apparently, it now has a code 5 which means it could be overwhelmed in 21 days.
That is all for now. Once again, thank you for all you do on the thread.
Jan 5, 2021 07:20AM sylviaexmouthuk wrote:
Thank you for your latest post. I think that in Australia during this pandemic everything is being done in a much more professional way. You seem to be doing much better. You are a big and empty country, so perhaps it is easier.
I think one of the main problems in the UK is over-population. We are a small island and especially in England we need to be a much smaller population. I would like to see us completely modernised and become a Federal Republic, even perhaps separate the north and south of England. Scotland and Wales need more population and England needs less. We have devolution with devolved parliaments in Scotland and Wales, but there is no devolved England parliament. As for Northern Ireland, it should be part of the Republic of Ireland. It is so manifestly across the sea from the United Kingdom and was a part of Ireland.
If you read my post to Gill, you will see how our government is already messing up the vaccine process.
Many thanks for your photographs. I love the one of your three grandchildren. How smart they looked.
Take care and try not to work too hard.
Jan 5, 2021 07:24AM helenlouise wrote:
Hi Sylvia, COVID is causing a little havoc but absolutely minor compared to what’s happening in your homeland and many other places around the world. The numbers here are very low with small clusters here and there which the state and territory governments are trying to keep under control by declaring hotspots, mini lockdowns, contact tracing and long lists of places that, if you have been to, you need to get tested. To my knowledge the death rate is presently very low if not zero. Borders are closed and as we live on a border we are allowed to travel within declared bubble zones. Australia has been very fortunate so far and fingers crossed it will remain under control. The hardest part is keeping up with the constantly changing rules. I think we are also fortunate that we won’t see a vaccine for some time which means we will have some idea of how it’s working in other locations before it gets rolled out here. It’s strange people are either right on board with how to behave or think the rules don’t apply to them or worse still think the whole thing is some sort of conspiracy. Managing international arrival quarantines and airline personnel seems to key. I can’t see this ending anytime soon but sincerely hope some controls can be established overseas. It’s truly frightening.
Take care everyone x
Jan 6, 2021 07:12AM Rosiecat wrote:
I was sorry to learn that you needed to spend so much time on the phone sorting out your cousin's hospital care on Raymond's birthday. I hope that you managed to get a clearer picture of the situation eventually.
Helenlouise's post was interesting. How different Australia's approach to the pandemic was compared to ours. An intelligent planned approach versus the chaotic, dishonest, smoke and mirrors version we've had to cope with.
Like you, after the debacle of test and trace I have no faith in the vaccination roll out going to plan. Is there a plan? I would prefer the Pfizer vaccine simply because it offers greater immunity. As we all know, our immune system declines with age and vaccinations become less effective, surely it makes sense to save the Oxford vaccine for the under fifties whilst those over fifty are offered the Pfizer jab. It's no good Johnson boasting about how many people have had their vaccination if it's not going to work. As usual, it will be 'fantastic' and 'world beating'.
Some London hospitals have now cancelled even the most urgent cancer surgeries. I'm afraid that many will die as a result. Urgent cancer surgery is also performed to extend lives or for palliative reasons. The burden of cancelling operations will be seen on the wards and in hospices in the not too distant future. My heart goes out to all the cancer patients who have been sidelined and left to cope with the minimum of medical care. The Norfolk and Norwich University Hospital is a coronavirus hub and is now taking Covid patients from other areas. I haven't heard what is happening with cancer treatment here.
The Covid situation here and particularly in South Norfolk is becoming very serious. Infection rates are high and growing steadily. This may be due to the new strain, but as you mentioned, we can't know unless the difference in infection rates between the two variants are given. I was shocked that the infection rates on December 29th were actually 80,000, not the much lower figure we were given. If the Government were aware of this, then surely Johnson's scientific advisors would also have known. It's difficult to know who to trust.
The Weather here is cold and grey. I'm considering leaving the Christmas tree up as the coloured lights are at least cheerful during a time when most of us feel anything but cheerful.
Keep safe and well.
Jan 7, 2021 09:54AM maryna8 wrote:
Hi, Sylvia and all
Here we are, off into the New Year, I wonder what it will bring.
Here in our state the Covid regulations are not as strict as some, we do not have a statewide mask mandate, for instance. Some cities do, it's all rather confusing, these entire situation is confusing. Some people are getting the Vaccine, but it's rather a hodge-podge and doesn't seem very orderly.
I had heard a few months ago about the Covid Variant that started in Denmark in the mink population, and mink farmers were having to kill off all of their minks. At the time I was reading this, 12 humans already had contracted this Variant. So the first thing I thought when I heard "UK Variant", was that the Denmark strain had made its' way there. But who knows, I haven't heard that anywhere else.
Here also there doesn't seem to be enough vaccine to go around, I have heard that people around my age in our area won't get the vaccine until April or May. Our County Health Dept. has sent out a statement that people not call them and ask questions because they are too busy. I agree with you, people are confused!
It's very hard to forget about BC, and being diagnosed. I thought I was going to start seeing my Oncologist once a year for check-up, but I am at 2 times a year with a mammogram before one visit and an MRI before the second visit. I don't mind this though, the Onco understands the nature of Triple-Negative and I appreciate her diligence and I keep all my appointments.
I think you are right about the Stage 0 diagnosis being, in many cases, okay to just keep an eye on and that mastectomy and reconstruction seem drastic. I was meaning to say that there seems to be a lot of these early-stage cancers being found here, and I suppose it's from earlier and more sensitive testing, and these tests are picking up many things that years ago couldn't be seen. I do think that Stage 0 is DCIS.
I notice that Adagio has checked in after what sounds like a very difficult surgery and aftermath. How very thoughtful of her to come here and give a report, she sounds exhausted. My heart goes out to her, and I'm sure Raymond will be following her progress with great interest too.
We will soon have a new President, speaking of politics. His term is starting with unrest, I am not foreseeing a peaceful time, not for a while anyway. Between the Pandemic, and political unrest, it's no wonder people are upset and confused. I think on our own we'll have to find our places of escape, and try to find some peace and quiet there.
Here's to a Happy and Peaceful New Year!
Talk to you soon, Love
Jan 7, 2021 11:00AM maryna8 wrote:
Thanks for calling me a Wanderer, I would like to do more Wandering than I have been, that's for sure. After my husband died, almost 6 years ago now, I thought of moving somewhere else. As some time passed, I decided to stay where I am and travel frequently instead. Now, having been here almost a year with no travel, I definitely realize why I thought about leaving in the first place. Being a woman in her upper 60s in a quiet rural area during a Pandemic can get a bit lonely, the pup helps a lot, but he is not much help at doing all the necessary chores alone.
Puppy and me did stay home on New Year's Eve, I was out quite a bit at Christmas but I don't have any more busy social days out on the horizon. Two of my step-grandkids will be graduating in the Spring, but I doubt there will be large gatherings, perhaps a family get-together. My stepson had Covid, and the family thinks they did too, so they do not have a lot of worry over it. Then granddaughter, who is graduating College, will be getting married in October. I hope and pray things will be calmed down somewhat by then.
I took down all of my Christmas décor yesterday, I miss the bright colors but everything was in need of a good dusting. Where does all the dust come from, I live on a paved road with a paved driveway, but still so much dust.
I wonder if the unrest in Washington DC will come up in the sermon next Sunday, although actually they have been talking about civil unrest for months and months. Maybe living in a quiet rural area isn't so bad after all.
Stay safe and warm, Gill, and I hope you will get vaccine soon if you want it.
Jan 7, 2021 11:08AM maryna8 wrote:
I am so glad you are home and starting to recover, and very glad you are alive! It sounds like no picnic, and time is the best healer, prepare to rest a lot and be spoiled.
Thanks for checking in, that is amazing of you to think about us here.
Jan 7, 2021 11:14AM maryna8 wrote:
Thanks for posting the pics of Christmas Down Under, it looks quite hot while you and family look very happy.
I may be coming there next Christmas and was interested in the pics where everyone is wearing shorts and no sleeves. We were told it will be no warmer than 80 F but then we will be mostly in and around New Zealand, perhaps it is cooler there.
Your grandchildren are so cute, and look like some lovable, mischievous little boys for sure! Also love their being dressed up alike.
A camel, a lake for fishing, and chance of sunburn; sounds very exotic to me!
Jan 8, 2021 09:21AM sylviaexmouthuk wrote:
I was so happy to see you back on the thread and so busy posting to the rest of the group. I wish you all the very best for this New Year of 2021.
I think we have the same chaotic mess with the Covid virus and the vaccines. I think the Covid virus may be one of those viruses, like the flu virus, that may necessitate injections every year. There are at least four viruses and probably more. We have the first virus, which I am calling the original virus, and then the one that they are saying is much more contagious, that originated, so we are told, in Kent in the UK. We are calling this the Kent virus. There is also the virus that originated, so we are told, in Denmark but there are these mink farms in many different countries, including the UK, so we had better call that the mink virus. Finally, we have the South African virus, which we are told is very nasty. There are probably others. It is not really known whether these vaccines will work for all of these.
As for working out who gets these vaccines, and in what order, seems to be a bit of a muddle. The latest I heard here in the UK was that first on the list would be the staff on the front line and people and staff in care homes. After that it said it would be done by age, starting with the most elderly, but I am not sure this is being adhered to. I noticed that VIPs and celebrities are getting vaccinated, and coverage on the media. We are told this is being done to encourage the rest of us to get vaccinated, but I do not believe this.
At the moment, those what have been vaccinated are getting the Pfizer vaccine but our government has changed the three week interval to twelve weeks despite being told this is not acceptable. Yesterday I was told that after next week or so, people would be getting the AZ Oxford vaccine because it is easier to store. It is also cheaper. Now we have the Moderna one. With the vaccines, apparently there is not enough to go round and there is also a shortage of phials to store them in. Watch this space!
As you say, with both the Covid virus and the vaccines, it is all very confusing and muddled.
I agree with what you say about not being able to completely shut our minds to breast cancer. We do get on with our lives but it is a life sentence. I do not agree with the fact that this dire disease is being pushed aside with all attention given to Covid patients.
We were all so glad on the thread to know that adagio had got through her surgery and was recovering at home. I am sure we shall all be following her recovery and giving her our support.
I do hope that the situation will settle down in the US. I could not believe what was happening in the Congress yesterday and that four people are dead as a consequence of the mayhem.
In the UK we are living in very strange times. We have not only to deal with the Covid virus and the restricted way of life it has brought, but, also, the consequences of Brexit. I think if we could have a referendum now, with all the information that was kept from us, that we would vote to stay in. We are just a little island and our government needs to be a bit more modest and a lot less arrogant. I would love to see a general election because I think our government is inept. Our Prime Minister does not come over as serious.
That is about all for now, as I have other posts to answer.
I can understand that your way of life in a rural setting, without your husband, and lots of chores to attend to, may need to change now.
Thinking of you and sending love and best wishes.
Jan 8, 2021 09:22AM Rosiecat wrote:
I was interested to read that you'd considered moving after your husband died. From all I learnt from those widowed by cancer during my time at the hospice, I believe you probably made the right choice at the time. Many of the women (and some men) who had lost their spouses, returned to the hospice as volunteers a couple of years later. They often said how glad they were to have stayed in their home for at least two or three years before eventually selling. Perhaps after six years you are ready. The stress and loneliness caused by the inability to travel freely during the pandemic must be very difficult for someone who loves to visit different parts of the world. Let's hope the new vaccines work.
I'm pleased that the puppy is good company and seems to have learnt some of the house rules, but the problem of doing the daily chores, particularly those that require moving and lifting must be hard to solve at the moment. Definitely no heavy lifting for you!
The new variant of coronavirus has spread very quickly in England, especially in and around London and East Anglia, where we are. Maybe we just discovered it first rather than being responsible for it. I'm not keen on it being called 'the English mutation', the Spanish must have felt the same during the 1918 - 20 pandemic.
For the first time ever I've left the Christmas tree up. I'm just not ready to say goodbye to all those cheerful coloured fairy lights. All other decorations have gone. Apparently the idea that Christmas decorations must be taken down by Epiphany is a relatively modern one. In previous centuries they stayed up until Candlemas, so they're staying where they are for now.
I've been attending virtual Masses now that Covid infections are so high here, particularly as I've been placed in the 'extremely vulnerable' group and can only leave the house for daily exercise and medical appointments. No mention of the civil unrest in America by the priests here, though the newspapers are bursting with it.
Adagio is amazing to think of us when she's so exhausted. I think we were all relieved to hear that she was safely home again.
Keep well Mary. I hope you'll have the chance to be vaccinated before too long.
Jan 8, 2021 09:26AM sylviaexmouthuk wrote:
Hello Gill and Helenlouise,
I am working my way through the posts, but I need to take a break now. I shall get back as soon as I can. I am waiting to hear that my cousin has been safely taken back home, after just over seven weeks in hospital. He is going to be in quite a debilitated state and will need carers.
Sending you love and best wishes.
Jan 9, 2021 11:34AM sylviaexmouthuk wrote:
Thank you for your latest post. I do agree that Australia's approach to the pandemic is much more sensible.
It seems that our vaccination process is already all messed up. I think I would also prefer the Pfizer vaccine but I had a call from our surgery this week on another matter and was told that after next week, in the UK, patients would be getting the Oxford vaccine. This news did not surprise me because it is cheaper.
As for Johnson and his front bench, I am just speechless at their lack of common sense.
I still think it is wrong that cancer patients are being sacrificed to Covid. I am sure we are going to have to live with it and probably have to be treated like we do with flu injections.
Like you in Norfolk, here in Exmouth the weather is grey, cold and depressing. It is very hard to get motivated to face the day.
My cousin is back home, but very much debilitated and today I have spent a lot of time on the phone with him making sure that the emergency carer system is working. It is difficult because my cousin is very confused and has developed short term memory problems.
Tomorrow January 10th will mark 19 years since Raymond and I came to Devon. It seems such a long time ago.
I shall end now as I have phone calls to make.