Calling all triple negative breast cancer patients in the UK
Comments
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Hello Sylvia,
After a dry and sunny weekend it's now raining in Norfolk, just as we were thinking of mowing the lawns. We don't usually use weedkillers on the grass but this Summer the thistles, dandelions and moss have taken over so we may have to use something to gain back control.
I read the reports on the UK's cancer treatment rating. I'm not surprised after my own experience. Surgery is taking far too long in many or perhaps most areas outside London. So many hospitals are desperately underfunded and deeply in debt after the PFI fiasco. PFIs were so badly thought through and have turned out to be the best ever get rich even quicker scheme for the already wealthy. That a small number of individuals have no scruples about making vast amounts of money off the backs of the NHS and ultimately sick people is truly shocking - but litigation-proof (apparently).
Like you, I usually only take vitamin D and probiotics, but I've had to add vitamin C since colitis makes me intolerant to many leafy vegetables and most fruit.
I went for my annual check up with my breast surgeon on Friday 13th. It was very quick, but I did have time to ask questions. I asked for my zoledronic acid infusions to be extended from 2 years to 3 years and possibly 5 years as NICE is considering this and looks like giving approval. My surgeon was happy with this. He explained that an ultrasound scan was pointless as I had no breast tissue left. I'll be offered a mammogram on the right side annually for 5 years. I had one on Friday and should have the results fairly quickly.
Brexit rumbles on. Is Boris Johnson deliberately trying to alienate the EU? I'm thinking of his 'incredible hulk' comment. Childish egotistical idiot. One wag commented that Johnson is more incredible bulk than hulk.
The bedding plants are coming to the end of their lives so I've bought a few trays of deep violet pansies to brighten up Autumn. I'm just waiting for it to stop raining so that I can refill my tubs with them.
Take care.
Love,
Gill x
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I do think that part of the problem in the UK is people 'not wanting to bother the doctor' so they put off going to the GP to get their symptoms scrutinised. Then you get cases like mine where a (newly qualified) GP was certain that my aching, swollen breast couldn't be cancer as 'that's not how it presents', so delasying my referral to the breast clinic.
Susie x
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Hi Susie,
When my daughter was breastfeeding and found a lump, her GP told her that she didn't need to be referred as lumps were common when breastfeeding. My daughter argued and got her referral. The lump was innocent, but may not have been.
My mammogram in 2019 showed what looked like a cyst developing on the left side. I wasn't recalled!
Gill x
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Gill, I was interested in what you said about Zometa maybe being given for five years. I am scheduled for three and shall see what my oncologist has to say about going on for longer.
Susie x
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Hi Susie,
Even if Zometa doesn't always prevent secondary bone cancer, it does strengthen our bones which have taken quite a battering from chemo.
Gill x
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Hello Gill,
Thank you for your latest interesting post. I have just about had it for this evening so I shall answer tomorrow.
I found the posts between you and Susie about Zometa interesting, but as you know it is not something I would ever have.
Here in Exmouth it is very, very difficult to get appointments with your GP. There are too many patients and too few doctors.
I shall talk more tomorrow.
Sylvia xxxx
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Hi Mary,
I'm so sorry that you returned from your trip to find your friend in such a bad way. I Do hope that her pain is now under control and her white cells have recovered enough to fight the infection.
I guess we come to a stage in our lives when our friends aren't always in good health - or worse. Even so, you do seem to have had a very unlucky couple of years. This return from holiday appears to be an improvement on last September. Fingers crossed that this is your annual dose of bad luck over with. Though your friend with stage 3 lung cancer will have a very difficult journey ahead of her and all you can do is offer your support, sit with her and pray for her. I'm sure she'll appreciate your just being there.
Enjoyed your photo, an impressive view and you look so well. I can now put a face to the name as I read your posts.
You've probably had your procedure by now. If so, I hope it was the small operation you'd hoped for and that your shoulder can now start to behave itself - finally!
Try not to do too much.
Love,
Gill x
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hi Sylvia
I am sitting by my friend's bed in the hospital, she has not been discharged , tomorrow is 10 days in here. Her sis has been here the last 3 days and nights, so I told her I could sit and she could go home tonite aND rest. She is still on anti-biotics, for a staph infection with neutropenia. Very fatigued and things keep popping up, one day low hemoglobin needing blood, the next few days very bad diarrhea.and so on. So far tonite is peaceful.
We never know what is around the corner, I was looking at a thread earlier on TNBC that had quite a few long-term survivors now metastatic, it made me sad. Then I thought of you and felt better. It made me realize again there is no "safe" place to be, we have to find all the enjoyment we can while we can., and face what comes at us. And really it's the same for anyone, whether or not there's been cancer.
I haven't been paying much attention to brexit, it seems to me there is no will to make it happen or it would be done. Question: how long did it take to merge UK and the rest of Europe? Was that also slow process? Sorry that none of you like Boris, will he be around long?
I am getting tired, think I we I'll try to sleep too. Talk to you later, love
Mary
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Hello Gill,
Thank you for your recent post. I definitely think that in the UK we cannot be proud of our position in the tables when it comes to cancer treatment and we need to up our stakes. I do agree with you about the PFI fiasco which has left the hospitals deeply in debt. We are certainly short of doctors and nurses and we have done nothing to keep the supply of these staff up to the numbers we need. We have relied too much on bringing in doctors and nurses from foreign countries instead of training our own. Those countries need their doctors and nurses but we poach them away with better salaries. The Establishment still has a very Colonial attitude to the rest of the world.
I do hope your colitis will get better, but I do understand why you are taking vitamin C.
It is true that these check ups are very quick but we have to believe that our doctors can quickly feel that there is something that does not seem quite right. I do remember asking both my oncologist and breast cancer consultant what they were looking for. Going over the breast cancer area they are looking for everything to be smooth and around the neck and under the arms they are looking for abnormalities in the lymph node areas. If they feel anything is wrong they will order scans, or at least they did when I was going through it all. I did have ten years of check ups. That all ended in 2015 and since then I just do my own check ups once a month. I keep an eye on the mastectomy area for any sign of a rash and with the good breast I look for any kind of swelling, inverted nipple etc. and then feel for lumps in the good breast and under the arms. I have never taken anything for granted. I have a friend here who had hormonal breast cancer that came back after 13 years and is in the bone. Nevertheless that was about 7 years ago and she seems fine. I have a couple of other women that live quite close and one of them was diagnosed in 2001 and is still fine. Again that was hormonal cancer.
I am still not convinced that Brexit will happen on October 31st. I do think we need a General Election but we need it to be on everyday issues such as the NHS, Education, Housing, Transport and Social Care, not to mention Poverty, Homelessness and the general awful state of this country. I do not believe any of the promises that Boris Johnson makes in this respect. He and his ilk live in a bubble and have no idea of the general everyday struggle of ordinary people. They are for the few and not the many.
That is about all for today. Take care.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your latest post. It is so sad to read what your friend is going through and I can imagine you sitting by her bedside. It is true that we do not know what is around the corner.
It is frightening when you read about long-term survivors that have become metastatic but we have to remember we are all very different and that there could be all kinds of things in a person that has caused metastases, especially general health and lifestyle, not to mention environment.
I do agree with you that we have to enjoy the day, not focus on the future and accept the reality of cancer. With it there is no safe place as you say. Life can end any time and for any reason.
I think you are right not to have been paying much attention to Brexit. This saga has been going on for too long and I think is peculiar to this country. The population is divided on this issue, but that is nothing new, whatever they say. It has always been divided between rich and poor and we are so antiquated and class-ridden that it just goes on and on. We need to modernise and get our feet in the 21st century.
The Brexit saga really took root in the beginning when in 1975 there was a referendum about joining the Common Market and the result was to join by a big margin. Once again the people were not told the truth, which was that this was just the beginning and that we were really signing up for the European Union and being part of a Federal Europe. This idea goes back to the end of World War 2 and was thought to be the solution to everlasting peace after two World Wars. I do remember General De Gaulle and his famous 'Non'. He did not want us in. I think we have probably been the sore thumb ever since we went in.
I sincerely hope that Boris Johnson will not be around for too long. You have to remember that he has not been through an election and has not been voted on by the people of this country, only a bunch of conservative members. These members represent less than 0.25% of the population. I cannot understand why he is so popular. He is a terrible speaker and he dodges questions. All he can do is clown around. If I look at our parliament I cannot see anyone who inspires any confidence in me. We have become a dumbed down society and a dumbed down Parliament. My favourite person is John McDonnell of the Labour Party.
That is about all for now.
Take great care of yourself.
Love.
Sylvia xxxx
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Sylvia, the idea that we voted to join the Common Market in the 1975 referendum is a widespread error. We joined in 1973 and voted on whether to stay in or make a hasty exit after only two years. As you say, the majority for staying in was a large one.
Susie
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Hello Susie,
Thank you for your post. I do remember that Prime Minister Edward Heath of the Conservative Party took us into the EC in 1973 but there was not a referendum then. It was the Labour Party that gave us the 1975 referendum but what we joined was nothing like we have now with the European Union.
That 1975 referendum with its in or out is reminiscent of what we went through in 2016. Now we have goodness knows how many interpretations of what was meant when people voted to leave.
Did you vote back in 1975? I did not as I had just returned from working in France. Raymond did vote at the time and voted to leave. I do wonder where all this is going. Do we ever get the truth from politicians. Often it is lying by omission.
I had to laugh just now. I put the news on the BBC and was amazed to learn that there had been a burglary at Blenheim Palace and that a gold toilet had been stolen! As the picture appeared, Raymond and I declared in unison 'obscene'! It boggles the mind what goes on in high places!!
I hope you are having a good week.
Love.
Sylvia xxxx
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Hello, Sylvia,
Yes, I did vote in 1975. I voted Remain, just as I did in 2016. Just as I would if I had the chance again tomorrow.
Susie
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Hello Sylvia and Susie,
I remember the 1975 referendum well. Harold Wilson was Prime Minister. I had been brought up in a staunch Labour, trades unions supporting part of the Midlands where, 30 years post war, many were still deeply suspicious of Europe and voted out. I'd moved away by then. I voted in. I also voted in again in 2016. I do feel that there is a lot wrong with the EU, but I also feel that our politicians stood on the sidelines whinging instead of working for change. I feel very strongly that too many countries have been allowed to join. If only we had stronger politicians and an honest, straightforward, straight talking leader who the EU could respect.
Gill x
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Hi Gill,
I agree that the EU expanded too far, too fast. Romania and Bulgaria should not have been allowed to join so early, riddled, as they were, with corruption.
Susie x
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Hello Sylvia,
Thank you for your post. I had completely forgotten about checking around the neck area. My surgeon didn't do this. Since I have a bath rather than a shower, and use old fashioned bar soap, it would be difficult to miss any lumps, I have always discovered my many benign lumps over the years whilst bathing. Also, having a leisurely bath is one of life's luxuries.
A letter reminding me that it's time to make an appointment for cervical cancer screening arrived yesterday. Screening ends after 64, I'm 65 in February so must have just scraped in. My colon cancer testing kit arrived last week at the same time as my appointment with the breast surgeon. I'll be very glad when this month's over.
I've been following the Supreme Court when I have time. It's the final sitting today and the judges have said that they hope to make a decision fairly quickly as there isn't much time left before brexit. It could be that we will know by late on Friday.
I very much admire the man with a very sick child, who stopped Boris Johnson in a hospital corridor yesterday. Many of us would like the opportunity to tell Mr Johnson a few home truths about what his Government has done to our NHS.
I wonder if you have had a chance to look at Chris Woollams' piece on the connection between HRT and breast cancer yet? It seems to me that the statistics regarding the HRT and cancer conundrum are always changing and many studies are flawed, resulting in a great deal of confusion for both doctors and patients.
I read Mary's post to you concerning some triple negative breast cancers returning after 5 years in remission. This is disappointing, but some people on these threads don't give details of age, overall health or ethnicity. In fact in some instances posters give no details of stage, grade, size, node status or treatment either, so it's very difficult to come to any conclusions. You always encourage women on the thread to add details which is helpful. I tend to be optimistic about the chances of being free after 5 years.
Time I did some gardening while the weather is good. I have the sad task of digging up some very old climbing roses which are no longer doing well after years of loyal service.
Enjoy your day.
Love,
Gill X
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Hello Gill,
Thank you for your recent post.
I can understand how glad you will be when your various tests are over. I did not like cervical cancer screening when I was having them.
As for the colon cancer testing kit, I have never done one.
I do hope all goes well when you have your appointment with the breast cancer surgeon.
I know all of these tests are useful but they do cause a lot of anxiety and I am glad that I do not have any, and just rely on myself to be vigilant about examining my breasts in order to pick up on any abnormalities that I can see or feel.
I really do not know whether we shall have Brexit on October 31st. I think there will be problems whatever way it goes. I do not have much confidence in any of the parties but I do feel that, if and when we have a General Election, Brexit does not figure as the most important factor. There are so many problems in this country that I would like to see a General Election where Brexit does not figure at all. If we have another referendum with a different result, I cannot see how it will have to be accepted if this one has not been accepted.
I do agree with you about what you said about what Mary was picking up on some threads about triple negative breast cancers returning after five years in remission. A lot of the time there are not enough details about the person concerned and about the details of their particular breast cancer. Some of the posts are too vague and there is no point in applying to yourself what has happened to others. We are all different and unless we have detailed accounts of a particular person we cannot come to any sensible conclusion. It makes more sense to focus on your own situation and analyse your own shortcomings. There are so many risk factors. If a person is overweight they need to lose some weight. If they are on an unhealthy diet they need to change it. If they are couch potatoes they had better get moving! If they have chronic health issues they need to find out how they can alleviate some of these. There are, of course, no guarantees, but you can at least try to make changes in your lifestyle.
I have been looking at Chris Woollams latest email and in particular article 2, Problem? HRT and then the article to further investigate this Largest study ever on HRT confirms dangers. In the first part of article 2 he says "6 million women in the USA take HRT, but HRT can triple breast cancer risk. I will also result in more than 72,000 women developing ovarian cancer. You do not even have to take it for long and the effects last for more than a decade."
I think this says it all and Chris Woollams has been pointing this out since way back in 2005!
I have never taken HRT but I have a neighbour here who was diagnosed with hormonal breast cancer, IDC, back in 2001 and she blames HRT for it because she was on it for many years.
All HRT does is make lots of money for the drug companies.
The menopause was a non-event for me with no problems at all, but if I had had any I would not have taken HRT or any other drugs to deal with it.
I also read article 3 Solution? Herb, and then the follow-up Is this the natural alternative to HRT? I have never heard of this herb, which seems to be being pushed as one of those miraculous cure-alls. There are some aspects of the way it is described that I do not like, but that is my personal opinion.
Finally, I looked at article 5, Having chemotherapy? "Do not run short of this mineral. 40% of adults are short anyway. A deficiency can reduce your survival time. It is linked to higher levels of heart and stroke problems, kidney damage and peripheral neuropathy. A shortfall also reduces your vitamin D levels just when you need them to be high."
"Chemotherapy drugs can cause a deficiency. If you are about to have chemotherapy you must read this, but anyone with an illness should understand that a shortage of this mineral could be involved."
This leads on to a more detailed article Take this mineral during chemotherapy.
I hope I am getting magnesium in my diet because I eat plenty of raw nuts and seeds, eat 100% dark chocolate and follow the Mediterranean/Rainbow diet.
I hope you are having a good weekend. We have been having very strong winds here and are now waiting for some well-needed rain.
Thank you for your contribution to the thread. It looks as though it is four of us that are posting regularly, Mary, Susie, you and I.
Love.
Sylvia xxxx
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Hello everyone,
I was doing a bit of research about bisphosphonates and saw one article that I thought covered a lot of aspects of them, so I thought I would post the link
https://en.wikipedia.org/wiki/Bisphosphonate
I also looked back at our thread as far as the end of July and saw once again that it is Gill, Susie, Mary and I that are the regular posters and the mainstay of this thread now. adagio and 53nancy from Canada post occasionally as do Helenlouise and Kath from Australia. There are lots of views but very few posts. I did see a few posts when I was looking back from ecfknights US Viewfinder US Jags56 from India and another one entitled Setara who signs herself Hassina.
I do enjoy the posts from Mary, Gill, and Susie but we have all finished our treatments and I do wonder whether this thread has now served its purpose.
So many have departed and it is sad that they did not bother to say goodbye.
Thinking of you all.
Best wishes
Sylvia xxxx
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I hope this thread does not stop. I check in daily to see what you all have to say. I’ve only posted a couple of times, once regarding my high Ki-67 % and again with feeling like I’ve aged 10 years with aching body after going thru chemo, radiation and chemo again. My anxiety runs pretty high although my oncology nurse practitioner reminded me at my last visit that I was at my 2 year mark. I guess you could say that this feed is a bit of a security blanket when I need to calm myself down. It gives me comfort to read any information and hope about this type of breast cancer. Please Sylvia and the rest of you keep it going!
PK
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Hello everyone,
I would have to agree with PK. I still find the exchange of information here to be extremely valuable. I do look at other threads, but find this thread to be more informative. Quality above quantity perhaps? I'm also very interested in how everyone here is getting on. I do wonder what has become of people who suddenly disappear and worry about those who have had bad news and are perhaps too unwell to post. I do wish we knew how Marias was coping, for example.
Having said all that, we do need new posters, not just viewers, otherwise the thread will become stale.
Enjoy your weekend everyone.
Love,
Gill x
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I don't understand why anyone would not do the bowel screening. It seems to have been dumbed down, though. Two years ago, I had to provide four samples. This year it was only one. They say it's to increase take-up but there's no point in increasing take-up at the expense of the efficacy of the test.
Susie
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hi Sylvia
I had my repeat shoulder surgery sept.17, it was more involved than I had hoped.
I was in surgery for 3 hours, I have read the surgeon's report and she did some very detailed work.. I took pain meds but already today I have taken none so far and have very little pain. I am in pillow sling and see surgeon on oct.2. Then on to therapy again.
She thinks she will move me faster thru therapy this time, no muscle repairs needed. Hopefully this will work, nowhere to go but onward thru it. Deja vu!
I hope you are very well, also Gill and Susie and anyone else, Kath and adagio too.
I am back to left-handed for a while
Later, love, Mary
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Hello Mary,
Thank you for your post. That was a very long surgery. I was glad to know that you are having very little pain. Let us hope you are now on the road to complete recovery.
I am keeping well but I could do with less stress. There are always ongoing problems in an apartment complex.
There seem to be so many problems in the UK as well and I think it tires us all out in the end. If we could get Brexit out of the way, so that we could concentrate on dealing with the many dire problems in this country, I think it would help.
That is all for now.
Love.
Sylvia xxxx
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Hello Susie,
I think when it comes to any kinds of scans, tests or vaccinations, we have to let people decide for themselves. As for the bowel screening, it is not actually done through the GPs surgery. I think they just get told whether a person took up the invitation or not. I think this can get muddled. At my surgery they insisted I had been to the surgery on a certain date and had had a bowel test. I had to tell them I had not been to the surgery that day and that I had not had a bowel test. I told them to remove this information as it was incorrect.
They had incorrect information about Raymond, as well, in the past, mixing him up with someone else and insisting that he had had heart surgery!
I think that we all have to be vigilant about what goes on, especially with the medical side of our lives.
Today is officially the first day of autumn, I am told and it does feel a bit like that here in Exmouth.
Take care.
Love.
Sylvia xxxx
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Hello Gill,
Thank you for your kind words about the thread. I have always tried to make it helpful, informative and comforting.
I certainly want it to be a quality thread.
From time to time I do go to Active Topics where there are about four pages of the most active forums/threads. I do look at the thread parathyroid disease and breast cancer, as well as the high calcium thread. They are in two different forums but it would be good if the could be merged into one.
I also like to look at the Alternative forum as I do believe in integrative medicine.
Like you, I do wonder what has become of people who suddenly disappear. It would not take much of an effort to pop in, especially on anniversaries, to let us know they are still going strong. Of course, if they are having problems it would be nice to be able to help them.
Like you, I would love to hear from Marias because she was having so many problems. It would be nice to hear from Hanieh, especially with all that is going on between the US and Iran and Saudi Arabia.
As you say, we do need new posters and not just viewers, because without posters there would be no forum!
I bought some more kiwi berries in the supermarket at the weekend. The large container boxes were almost empty so they must be popular. They are £1 per box. I also saw the largest avocado I have ever seen. It was the size of a melon and cost £4 and came from South Africa. I was wondering how large the stone in the middle would be.
I shall be glad when this Brexit gets solved one way or the other! It is such a mess!
Have a good week.
Love.
Sylvia xxxx
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Hello PK,
Thank you for your post. I was glad to know that you do look at our thread daily and am glad that it is of help. Please do not be shy about posting. It is good to have experiences, feelings, tips and ideas from everyone.
Cancer treatment does take a toll on our body and we have to be patient and let it recover slowly. It has been through very traumatic treatment and affects us physically and mentally. Everything will slowly get better and whatever after-effects we have to live with, we somehow learn to do it. We shall probably always have bouts of anxiety because we know we are not cured and we never know what may be just around the corner. Life is unpredictable, so we do not know that anyway. A good philosophy is to live the day and to enjoy it as much as you can.
Congratulate yourself on being two years out.
I am so glad that you feel that our thread can help as a bit of a security blanket when you need to calm yourself down. Feel free to come and join us whenever you feel the need and let off steam.
Thinking of you.
Love.
Sylvia xxxx
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Hi all,
I have just started my third week back full time at work! I don’t know how I fitted work in. I seem to be so busy now! And it’s quite tiring. Luckily I had a relaxing weekend to rest up and enjoy the garden which is about to pop now that spring is upon us. Life is going pretty well and my scar still has good flesh on the surface.
Unfortunately it looks like I have another met coming up on the scat edge (which makes sense because the surgical biopsy did not give clear margins). My GP concurs with her examination. I said I’d come in a month and we can review it then. She feels pretty confident they could zap it with some targeted radiotherapy but I don’t think so. I intend to leave it well alone it until it causes problems. Not doing anything to upset my new flesh!
I feel for you guys in the UK with all the political issues but at least your not living in Hong Kong! I imagine your weather is starting to cool as autumn kicks in. I love autumn second to spring.
Hoping everyone is well. Xx
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Sylvia - I have always appreciated this thread and the individual responses you give to each of us. You are amazing and such a wealth of information to us all. I have not left the thread by any means, but I do find that life gets very busy at times and I have a fairly big family in which something or someone always needs help and that generally falls on my shoulders. I do not resent this at all because I am happy to help - and of course - filled with gratitude that I do have the health, strength and energy to help people out. But it does mean that I do not come on the forum much at all. However, I also believe that sometimes things naturally come to an end and our priorities can change over time - not forgetting, that often we simply need a break!
Maryna - so glad that you have got your additional surgery out of the way - and I hope and pray that your recovery will be uneventful from this point on. You have gone through so much pain already that you deserve to be free from it!
Susie, Gill, Kath , Maryna, Sylvia - and all others - hope you have a good week and we each have to remember to take the best care of ourselves and be our own advocate.
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Hello Helen,
Thank you for popping in. it is good that your work is keeping you busy but that you can relax at the weekend. Gardening is such good therapy.
It is good news that your scar is so much better.
Keep an eye on that met which is coming up. Would it be a good idea to get it zapped while it is just forming? I know that must be a hard decision to make.
I do think we are all sick and tired of Brexit and will be glad to get a solution one way or the other. Personally, I would like it out of the way and to have a General Election in which we think of the real problems we have here, such as 14 million living in poverty, many of whom are working but do not earn enough to live on. This is a disgrace, as is the number of people living on the streets and others having to go to food banks. How can a Prime Minister (unelected) understand any of this when he is a millionaire and pays £180 for his favourite bottle of wine.
We have just had a phone call from our GP surgery about booking an appointment for a flu injection. Raymond will probably have one but I shall certainly not.
As you say, we are not living in Hong Kong!!
Love.
Sylvia xxxx
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Hello adagio,
Thank you for popping in and for your kind words about the thread.
I am always glad to hear from you because you are one of the group that has been with us for a long time. I always keep you on my list as part of our thread and I do know that you have a busy life with your family. I do understand that people need a break.
I was wondering how your husband is getting on. I do hope that he is making good progress.
I was glad to read that you are feeling strong, healthy and energetic. That is really good news.
The other day I was having a look at the Active Topics list and always have a look at the TNs group. I saw three women had popped in to say hello who go way back on the thread, you might remember them. They are Sugar from Canada, Linda from the US and InspiredbyDolce from the US. It was good to know they are all doing well.
Everything is much the same with me, but I never take anything for granted.
Take great care.
Love.
Sylvia xxxx
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