Calling all triple negative breast cancer patients in the UK
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Hello everyone and especially the group posters,
I do hope all of you are well and safe and not getting too tired and fed up with all the non-stop news about coronavirus. I do hope those patients going through the trauma of diagnosis and treatment are not having their care delayed. If you have any such experiences to tell please let us know. We are all aware that with cancer in general time is of the essence.
Let us know whether you are sticking strictly to orthodox treatment or whether you are integrating alternative and complementary treatment.
I keep a notebook in which I write down snippets of information that I pick up from reading etc. Recently I was looking through the notebook to refresh my mind and the following things caught my attention.
Gingko Biloba could help combat the coronavirus.
Blood pressure drugs could make Covid-19 lethal.
Filtered coffee helps prevent heart disease.
Starve the body of sugars and cancer cells will start to die. Results are as successful as anything achieved by chemotherapy.
Fasting and high doses of vitamin C help to kill hard to treat cancer cells.
Please remember that I am not saying these things. They are just things I have read.
I do believe that sugar is bad for our health and I have used Gingko from time to time and found that it helped a little with the feelings in my feet that I have from peripheral neuropathy caused by chemotherapy and the use of docetaxel.
Wishing everyone a relaxing and safe weekend.
Special hellos to Mary, Kath, Helenlouise, Marias, Peter and Liz, Jags56 and any others that I may have forgotten.
Best wishes.
Sylvia xxxx
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Hello Sylvia,
Michael and I had our flu jabs in mid September. Michael was called to a mass vaccination clinic (via text) and I had mine at Waitrose. The Vaccine at my local surgeries ran out very quickly and many, even in those groups classed as vulnerable, had to wait. I'm very glad to have had the jab early. I really don't think I'd be very keen on a drive through arrangement. We're not able to book separate appointments for jabs at our surgery, but you might have more luck.
The Covid situation has been very badly dealt with in England. A UK wide 2 or 3 week circuit breaker would have at least stopped all this confusion. It was decided early last year that I should host the family Christmas, but my daughter telephoned last weekend to advise that we cancel for this year as Covid infections are rising rapidly. Just a few days later, Johnson tells anyone that was daft enough to listen, that we could well have a family Christmas after all! The scientists said otherwise and I would prefer to take the advice of experienced epidemiologists over that of our PM. He's probably dreaming of the Christmas newspaper headlines, 'Boris saves Christmas'. What a triumph!
I haven't really been following the latest treatments for TNBC, though I can't help noticing that people list a whole array of medication in their details. I wasn't aware of anything likely to be a game changer. Metaplastic is thought to be a stem cell problem, so I'm not sure if a breakthrough for triple negative would actually help me. I research metaplastic regularly and have been very pleased to note that much more research is being undertaken - finally. I know how rare my subtype is, but behind every diagnosis and statistic is a very anxious human being.
My bone mri results have still not arrived, I have to wonder if checking scans has been outsourced. I could do without this added anxiety.
Hope Marias is alright, Colombia is overwhelmed by Covid and that might well jeopardise her treatment. We just have to hope for the best for her.
Stay safe and healthy.
Love,
Gill xxx
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Hello Everyone,
I don't post on here very much because I really don't feel like I have anything of interest to anyone. But I do check in on the thread to read the post by everyone. I simply muddle along with my anxiety of cancer returning. I had a mammogram and ultrasound a couple of months ago due to pain I was having in my left breast, the radiologist identified an area on my scar tissue that they want to look at again next month, the test findings say that it is fat necrosy near the scar tissue, my nurse practitioner said it is nothing to worry about. She said let's do another ultrasound in November. But of course I am. I asked if they could do a biopsy and they said there wasn't anything to biopsy, just a shadowed area.
With Sylvia's last post and maybe this has been talked about already, so pardon me if has. But I stumbled upon a diet for TNBC or to prevent it... It was long and then it led me to a link where I had to pay for more information to see what I should be eating. I know just a money maker for someone but two of the things they said that you should avoid eating is salmon even wild caught and turkey because of some vitamin or mineral contained in it? It also listed a lot of other stuff that I eat, beans, rice, some vegetables. When I asked my oncologist all she ever says is just eat a balanced diet. I eat mostly a plant based diet, but I do occasional want salmon or turkey, chicken and a very rare occasion beef. All of the meat that we do purchase is from local farmers and producers. And the salmon is always wild caught. Have any of you heard of a so called diet to prevent TNBC?
I didn't get a PCR after I was done with chemo, but 90% of tumor was dead. Did all of you get a PCR after your treatment?
I was sadden by Boris Johnson and the free or reduced lunches for children in need. I know here in the US the children that receive those lunches maybe the only meal that they get for that day. Even when the schools in our county were closed during the beginning of Covid they still provided lunches for any child that needed it, they could come and pick up. They did an interesting study in India where the drop out rate of children from school is so high, they found that it was from a poor diet which led to poor learning skills. When the schools started a lunch program for the children they stayed in school and went on to secondary school, and on further to higher education.
Paula
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Hello Paula,
It was nice to find your post. We are always glad to see those who have formed part of our group. Everyone that posts has something of interest to say and I have found your post very interesting.
I am sure we can all understand when you say that you muddle along with the anxiety of cancer returning. I think we all have that anxiety in the back of our mind, even though we appear to go on living life normally.
I was sorry to read that you had been having some pain in your left breast and I can understand that this pain would make you anxious. I do hope that you will have good news when the area on your scar tissue is looked at again next month. I think it could well be fat necrosis and it is good that your nurse practitioner thinks that it is nothing about which to worry. I do hope another ultrasound in November will give you good news. Try to keep busy to keep your mind off all of this.
As for diet and nutrition, I firmly believe in the Mediterranean/Rainbow diet and that everything in moderation is a sensible way to go. Common sense tells us that we should base our nutrition on a mixture of fresh fruit and vegetables, nuts, seeds, pulses, wholegrains and so on. Above all we need to avoid junk food and over-processed food and eat food in its most natural state possible. I do not eat meat or dairy products but I do eat some wild salmon but not much in the way of other animal products. I cannot think that wild salmon is bad for you but I also think that there is nothing wrong with a purely vegan diet. In the west there is too much emphasis on meat eating and dairy products. I have read that farmed salmon is not good for you and I would not eat it, but we do hear that oily fish is very good for us and I prefer wild. I have read that there is a problem from the fishing farms with the farmed fish escaping and mixing with the wild fish and adulterating them.
I cannot think that there is anything wrong with eating beans. They are a good source of protein and I do buy canned organic red kidney beans as well as chickpeas and lentils. As for rice, I do eat some but only wholegrain rice, not white. The same goes for nuts. I eat only raw nuts, such as Brazils, organic almonds, walnuts and cashew nuts.
Having a healthy diet is the best way of trying to prevent any kinds of illness, such as cancer and diabetes.
I would think that a little meat from local farmers will not do any harm, particularly if it is organic.
We should know by now that drinking alcohol is a risk factor in breast cancer and I think that it is a good idea also to stay away from sugar. Both are very addictive.
As for chemotherapy, which I had before surgery, it shrank the tumour but did not get rid of it completely. After a mastectomy and three weeks of radiotherapy I did have a pcr.
I hope this helps.
As for Boris Johnson I think he should be ashamed of himself for not wanting to extend free food for children. It seems common sense that underfed, undernourished children will underperform at school. You do not expect a car to function with no petrol, so why would a child be expected to function without the fuel of good healthy food? It is even worse coming from Boris Johnson in that he is overweight and that he and his colleagues are getting subsidised food in the restaurants in parliament and that they have huge salaries and huge expense benefits. They should be ashamed of themselves!
That is about all for now.
Thinking of you and sending best wishes.
Sylvia xxxx
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Hello Paula,
The fear of cancer returning is difficult to overcome at times. Pain in the scar area isn't unusual, but you're absolutely right to have this checked out, we just can't afford to let things go and hope for the best. I hope your November ultra sound shows nothing more than fat necrosis and that gives you some peace of mind. Sylvia's right, to the outside world we give every appearance of just getting on with life as normal, but there's always this anxiety to cope with. I have to try not to get angry with those people who ask me if my cancer has gone, am I cured? and worst of all those who insist that because their friend/relative had cancer thirty years ago and is still alive that I'll be the same.
Regarding PCR, I had chemotherapy after my mastectomy which is often the case with metaplastic breast cancer. Metaplastic often responds poorly or not at all to chemo and it's generally considered better to have the surgery as quickly as possible. I'm hoping for the best as FEC T is a strong treatment.
The Mediterranean diet seems to be the healthiest and the most simple to follow. I do have the occasional glass of wine to be sociable and at (pre Covid) parties, I usually walked around with a small glass of tonic water with a slice of lemon so that people thought I was drinking g&t. Alcohol in excess isn't a good idea for anyone, but after cancer especially.
Boris Johnson is a nightmare of a leader. Children going hungry in a wealthy country like ours is utterly shameful. Also, his response to Covid has been muddled throughout and our high infection rate has overwhelmed the NHS, which had led to people with cancer and other serious conditions having their diagnosis and treatment delayed.
Paula, your post is really interesting and it was so good to hear from you again. I worry that I just ramble on and drift away from the topic of TNBC at times, so don't be put off by not having much new to add.
Let us know what your ultrasound results are.
Love,
Gill xxx
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hello igual have a sonda for pipi
Te mens grows in brain
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in tallo cetebrL
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now im sick
Now im homenammmmm
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Dear Sylvia and Gill,
Thank you for responding to my post. I so appreciate your willingness to take the time to care. I think what we eat is so important for our health (even though I ate healthy pre breast cancer). That’s why it was alarming to see this so called TNBC diet with all these things that I consider healthy as something that shouldn’t be eaten.
Sylvia what a good analogy with fuel in a car and nutrition, it truly is our fuel. A little bit of prevention and keeping children in school goes along way. I’m so appreciative of this thread and the support you give to so many.
Yes Gill I too dread the questions of acquaintances that are asking if I’m in “remission” or cancer free. I usually respond with “so far so good”. It’s almost as if I don’t want to jinx myself. Thank you for understanding.
I just saw Maria post, I don’t know Spanish I do hope she is oLove
Paula
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Hola Marias,
It was wonderful to hear from you.
I am trying to understand what you are trying to say.
I think you are telling us that you have had a probe.
I think you are telling us that you have spread or some problem in the brain.
Are you saying something about stem cells?
You are obviously feeling ill.
I am going to get this translated into Spanish for a better understanding for you.
I am sorry to hear that you are having so many problems with your health in addition to all the problems that are going on in your country.
Please come and talk to us.
Love.
Sylvia xxxx
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Hola marias
Fue maravilloso tener noticias tuyas.
Estoy tratando de entender lo que estás tratando de decir.
Creo que nos está diciendo que ha tenido una sonda.
Creo que nos está diciendo que se ha propagado o tiene algún problema en el cerebro.
¿Estás diciendo algo sobre las células madre?
Es evidente que te sientes mal.
Voy a traducir esto al español para que lo entiendas mejor.
Lamento saber que está teniendo tantos problemas de salud además de todos los problemas que están ocurriendo en su país.
Ven y habla con nosotros.
Love.
Sylvia xxxx
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Hello Gill,
I have finally made my way back to your post of October 25th.
Raymond and I went to our small local pharmacist in the town to get our flu jabs done. All we did was turn up at 11 am this morning, as requested the day before, and the pharmacist did the jabs for us. I had mine done in my left arm as I was told to do years ago by the oncologist, and not in the right arm where I had the surgery. I was told the same for all blood pressure readings. I shall wait to see if there is any kind of reaction in the right arm as there was the last time I had a flu jab in 2017. My hand and arm swelled a little where I had previously had slight oedema just after breast cancer treatment.
As for the Covid situation, you might want to read some articles in the New Scientist magazine. Most of the magazine is about Covid. One article is entitled What's Your Covid-19 Risk? - a scientific guide to navigating a new world of uncertainty.
Another article is Circuit Breakers – Do short, sharp lock-downs work?
Yet another The Herd Immunity Myth – Why "let it rip" arguments are fundamentally flawed.
Finally, Could Treatments Make the Virus Evolve?
The leader page is Now is not the time – Wearisome it may be, but we need to hold a steady course on Covid-19.
I did hear on the radio that with this coronavirus any immunity drops very quickly. I think it is something we are going to have to live with, like we do with the flu virus. Flu viruses spread very quickly, but we have never closed society down because of them. Bacterial pneumonia is a complication of flu and we treat it with antibiotics. Viral pneumonia seems to be a complication of coronavirus and we do not have cures for viruses.
I do hope you will get your bone MRI results.
It is strange that you mentioned Marias and then she appeared. It was hard to understand what she was saying but I think she has more complications. I do hope she will post back.
It was good to see Paula back on the thread.
I do hope Mary will post as well.
That is all for now.
Love and best wishes.
Sylvia xxxx
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Dear Marias,
I can see that you're struggling. I'm so sorry that you are going through all of this, my thoughts and prayers go out to you. I do hope that you are not all alone in your apartment. At this time you need to have someone with you to help while you rest. Perhaps you could tell us more, but please don't worry if it is all too much for you.
Marias, I wish the very best for you.
With much love,
Gill xxx
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Hello Sylvia,
I much prefer going to the pharmacy for my flu vaccination, GP clinics are a bit like cattle markets. I think some people don't realise that once you reach 65 flu jabs are free, wherever you choose to have them. It's a bit early for the flu season to begin in the UK, I dread to think what will happen when we have both seasonal flu and Covid to contend with.
We no longer have free access to the New Scientist unfortunately. The article on why going all out for herd immunity won't work sounds interesting. It was the hope that so many clung to. Yesterday's news really crushed the idea. People have immunity for a short time, but then it appears to drop off - much like the common cold. Not the news any of us wanted to hear.
I was dismayed to read this week, that almost half of all women in the UK fail to check their breasts for changes. It's such a common cancer and too many people believe that it is easily treated and curable. Is this because breasts aren't a vital organ? I still find that there's a great deal of ignorance about how cancer spreads and where it spreads to. Breast awareness month is failing. I have always attended for mammogram appointments, but that isn't enough. Mammograms often fail to detect small cancers - mine did. Also, some breast cancer types are very aggressive and fast-growing and mammograms are three years apart. A lot can change in that time.
I hope we hear from Marias soon. She sounded very distressed in her posts. She's a much loved member of our group.
Prime Minister's Questions this afternoon. I wish Johnson and Cummings would just resign and allow someone else to run the country. The PM just adds to the stress we're all under.
The sun is shining here. We were out for much of yesterday and it absolutely poured with rain. Some of the ditches were failing and the roads were muddy and very slippery. Someone in the village has already reported that the top of their lane is flooded and Michael is investigating as I write.
That's about all for now. I do hope that there are no side effects from your vaccination this time.
Keep warm and safe.
Love,
Gill xxx
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Hello Paula,
I think we're all going to be worried by Marias' posts. Her country has descended into violence and chaos and this has made Marias' situation much more difficult than it should have been. We can't be sure if she's still able to access treatment or even effective pain relief. It's a frightening situation for anyone to be in and Marias has become a friend to us all.
I met some friends for lunch yesterday, it was so good to be able to forget about my impending mri results or the inevitable strange aches and pains. Covid and the necessity for social distancing isn't improving our psychological health, especially after cancer treatment.
Good luck with your ultrasound and do let us know the results.
Love,
Gill xxx
I
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Oh my, not good about Marias. Nor you Gill waiting on results and Paula too! It’s Very difficult not to worry when waiting for results. I think that’s part of the reason they back scanning off to a minimum if not all together when people are responding to treatment. I asked my imaging centre for a a list of all my scans On Monday when I went for my 5th heart scan. Since I was diagnosed in 2013 and I have had a total of 56 Radiological scan at the local centre. 48 since my diagnosis in 2018. About 10 of those were ultrasound plus one MRI. Lots of radiation for the body to deal with In all those other scan, on top of cancer, I do believe my oncologist now feels I have a good chance at longer term survival and advised no more scans unless clinically warranted. Having said all that I have found another nodule further along my scar line. Will be surprised if an ultrasound and biopsy is not my next step. See MO next week.
that’s all for now.Wishing everyone the best, especially Marias to be safe and getting the treatment she requires.
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Hello Gill,
Many thanks for your latest post.
I agree with what you say about GP clinics, and we avoid them. We did get a letter back in 2017 from the GP surgery, The Manager, telling us off for not going to the surgery. We have just ignored it. I think that there is now going to be confusion about whether people have flu of Covid symptoms.
It is a pity that you cannot get access to the New Scientist on-line. I have not had time yet to read it. I found this part of an article interesting "Up to now, we have been lucky on this score (on this core means that we should "mask up, observe distancing and stick to any extra rules that apply, to prevent the virus evolving"). SARS-CoV-2 has changed little since it emerged. It is so stable genetically that drugs and vaccines in development ought to work against all variants currently circulating, yet we cannot take that for granted."
"Unfortunately, herd immunity is bad science and would also expose us to the risk of viral evolution."
"The virus does have the capacity to mutate into something worse, but can only do so if it is transmitted from human to human."
"Cutting off transmission is therefore vital while we await a vaccine. If and when that vaccine arrives, high levels of uptake are vital for the same reason. Even more so, in fact, as the vaccine will put pressure on the virus to mutate."
Reading this article I reached the conclusion that the UK government was too reluctant to get into lock-down too quickly and has, consequently, messed everything up and allowed the virus to get out of hand. In other words, for me, he who hesitates is lost! I also conclude from all of this that the vaccine which is supposed to be the cure will put pressure on the virus to mutate and be worse!
I think Covid-19 will probably be amongst us for a long time and may be seasonal, like the flu.
I cannot understand why women in the UK do not check their breast regularly. Breast cancer has become so common that women will probably be lucky if they escape having it. Mammograms are not reliable. We have to take charge of our bodies.
I heard on the radio this morning that cancer surgery is being delayed for many, so that beds and wards can be used for Covid patients. This is not ethical.
Like you, I am concerned about our friend Marias. The lines she wrote were hard to fathom out. They were not coherent. I do hope we hear from her. Colombia is much in the news lately and the news is horrible.
I do not think parliament is sitting this week, although I do not understand why it gets a week's holiday for half-term. The Lords is sitting, but whether they are awake I do not know! I think that Johnson and Cummings, as well as the other aide, Edward Lister, should definitely resign. The whole of the front bench is not fit for purpose and I am disappointed with the lack of fire in the belly of Labour. They keep sitting on the fence.
That is about all for now. It is a dull wet day here, yet again and Raymond and I are now going to make ourselves some lunch.
Love.
Sylvia xxxx
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Hello Helenlouise,
Thank you for your latest post, it is always good to her from you.
I was absolutely astounded at the number of scans you have had since your diagnosis in 2013. It seems to me that 56 radiological scans since 2013 and that 48 of them have been since 2018. I am not a doctor, but that seems to me just too much. I am assuming that by radiological scans you mean CT scans and/or bone nuclide scans. I do agree with you that you have had lots of radiation for the body to deal with in addition to going through all that treatment for cancer. I was glad to read that your oncologist now feels that you have a good chance at longer term survival and has advised no more scans unless clinically warranted. I do hope you will not have to have another scan for nodule that you have found further along the scar line. Please let us know how you get on with the oncologist next week. Try to keep busy while you are waiting to help with anxiety. You must be tired of all this.
I have been having a careful look at all your treatment since you were diagnosed with DCIS in your left breast 2013. It is hard to believe all that has happened since then. I noticed that you had two lumpectomies in 2013. I know that in this country you cannot have a third lumpectomy. After two, if there were not clear margins, I think you would have been offered a mastectomy.
I noticed that with that first diagnosis in 2013 that your tumour status was hormonal.
I would be interested to know whether you were put on anti-hormonal medication at that point, because you do not mention anything about this in your details. I would be interested to know because, in the past, I have read that after five years on an anti-hormonal such as tamoxifen, you can get breast cancer again that is triple negative. I suppose this would be the same for anti-hormonals such as Arimidex (aromatase inhibitors). I think patients with tumour hormonal status may be kept on them for ten years now. Some patients feel quite well on these medications.
I always felt so positive that I was triple negative and did not need to take anything after standard treatment.
I see from your details that you were diagnosed again in 2018. The cancer is still in the left breast and that it has gone from DCIS 1cm stage 0, to IDC 2cm and now stage 3B, and it has gone from hormonal positive status to triple negative. This time you are given chemotherapy, have a mastectomy of this left breast and a prophylactic of the right. All was rounded off with radiation therapy. Then I noticed you are given, the very next day, Xeloda (capecitabine). Why was this, do you think?
In April 2019 you were diagnosed, just eight months later, with IDC, on the left side, 2 cms stage 3c and then 14 days later it is metastatic. Can you explain what DUAL means after you are stage 4 and metastatic?
I see that you go from triple negative to ER-, PR- but HER2+ and then from there onto targeted therapy with Perjeta and Herceptin.
Does DUAL mean in both sides of the removed breasts?
I am really interested in all that you have been through and I do admire your courage at doing all this. It would be very useful of you could finish your details and bring us up to October 2020.
I do admire all the energy and determination you must have had to get through this long journey.
Keep looking forward and be optimistic.
Sending you my very best wishes and wishing you well.
I do hope your work is going well.
Love.
Sylvia xxxx
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Hi Helen,
Absolutely agree being exposed to so much radiation can't be good. The UK has cut right back on scanning. Also, radiotherapy is rarely undertaken after mastectomy plus chemotherapy, whereas this was the norm just a few years ago. It's all a learning curve, even for the medics I guess.
What amazing news for you. A good chance of longer term survival, you've made my day. It's so well deserved after all you've had to go through. So, just one small cloud on the horizon, (isn't there always), and you'll be looking forward to some less stressful times ahead. The likelihood of a scan and biopsy to check on the scar line nodule seems fairly high and you'll no doubt want that peace of mind too. I have everything crossed for you. Good luck!
Love,
Gill xxx
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Hello Sylvia,
I'd completely forgotten that Parliament was in recess. This shouldn't be happening at a time of crisis, the Government needs to get a grip of this mess. Why isn't Matthew Hancock addressing the growing backlog of essential surgeries? It's all platitudes, no facts and no solutions. Opening the Nightingale Hospitals can't work if there's insufficient qualified, experienced staff to treat patients. Of equal concern is that, rather than wait for surgery with the NHS, a growing number of people are paying for private treatment. Presumably many people are using up their savings or even taking out loans against their homes. No doubt this will lead to considerable hardship for some in the future.
My oncologist said that the number of women being diagnosed with breast cancer is growing. But this was due both to women being more self aware and to breast cancer being on the increase. In my experience, more women are checking for changes, however the UK still has the problem of the 47% who don't. I'm not sure of age distribution. Also, what are the chances of finding a lump for women who have cosmetic implants? A report from the Aesthetic Society in America reported a decrease of 14.9% in breast implant surgery and an increase of 34.4% in surgeries for the removal of implants. This may well be due to the health issues surrounding implants, but I would also hope that a growing number of women do want to check their breasts and are concerned that they may miss a tumour hidden by an implant.
Covid infections are falling in Norwich, but growing alarmingly in parts of Norfolk. This is mainly due to food processing factories. We have a number of chicken and turkey processing plants in the South of Norfolk, the latest in the spotlight is a twenty minute drive away, so not too close.
Grey and miserable here today.
Keep well,
Love,
Gill xxx
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hi Sylvia & Gill,
Thank you for your responses. When I look back I too am amazed at the amount of treatment I have had. Ill try to fill in the gaps.
In 2013 we opted to go to radiation after the second lumpectomy. In hind sight this may have been a mistake. As it was DCIS the treatment team offered only the options stated. The RO felt that radiation would ‘mop up’ the small positive margin and I didn’t want any more surgery. Mastectomy for DCIS was seen as overkill. Hormone therapy was also not offered. I believe the team followed the standard of care at that time in this country. I almost made the five year date, with IDC TNBC being diagnosed in 2018. This was not stated as a recurrence but that is debatable.
The reason for radiation post neoadjuvant chemo and BMX was because it was TNBC, the cancer had breach one node (indicating that the cancer had possibly infiltrated the skin) and I did not achieve a PCR from the chemo. The RO was ok with a second round of radiation because of the time lapse since the first round. Another mistake? After radiation I was offered Xeloda, to try and stave off recurrence.
Skin Mets appeared whilst on this treatment. The reason I took so long to heal from the surgical biopsy of the skin Mets was because the area has been so heavily treated. The reason for surgical biopsy was to get enough cells to confirm status I.e. to do both FISH and IHC on HER2. This is called DUAL. This confirmed my change in status to HER2 positive. Which opened up a whole range of standard treatments. Thankfully. Had I remained TN I would have been waiting to get into a trial or buying drugs not currently in the Australian system. There are many treatment regimes being used in the USA that are yet to be approved here.
I have asked if all Mets will be HER2 + and the response was they don’t know until biopsy. Short to say one could have a variety of tumors with different status! My MO staged me as IV once the skin nodules were diagnosed. This is contentious because some would say I am stage III regionally advanced. MOs reasoning is that the cancer is in my lymph system. Moving forward I will be living with treatment. H&P Indefinitely until progression or unacceptable toxicity.For the current lump I would imagine it will be an ultrasound and biopsy. Will know next week after MO examines me. I don’t intend on having any further surgery to my chest. They may decide to put me back on taxol seeing as I didn’t have the full course when I started on it in March. We stopped the taxol because my bone marrow was struggling bouncing back and the last PET showed no evidence of active disease. So the spread (ribs, Mediastinal, skin) seen in March was gone! I have read that Kadcyla is getting good results with HER2. That might be an option if the lump is cancerous.
On the upside not all of the scans I have had over the years have beenradiation based. I have had at least a dozen ultrasounds and one MRI.
Hope that fills in some gaps. Writing up your personal history to tag your posts gets tricky when there is a lot to include.
Take care xx
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Hello Gill,
Thank you for your latest post. As usual it is interesting and I cannot add much to it.
I have had a restless day today with all the news coming in. The coronavirus now seems to be out of control with nearly 100,000 cases being recorded a day in England, and still Boris dithers. We need a lock-down.
I am very concerned about what is going on in France today and I am wondering where we are going with this.
I am also wondering where we are going with the Labour party and very disappointed in Keir Starmer. He just does not have the spark and energy to be a leader in these troubled times. I find it hard to believe that Jeremy Corbyn has been suspended from the Labour party. It looks as though we are ending up with a Tory establishment fiefdom. Perhaps we need another Enlightenment in this country!
I thought you might be interested in some snippets of information that I have taken from the New Scientist. The following is a list of percentage chances of certain things happening.
1 in 106 – lifetime risk of dying in a motor vehicle crash in the US.
1 in 9821 – lifetime risk of dying in an air or space transport accident in the US.
10 X – the risk of passing on the coronavirus inside a home is 10 times higher than that of passing it on in hospital and 100 X higher than infecting others on public transport.
An 80 year old is 1000 X more likely to die from Covid-19 than a 20 year old.
1 in 4000 – risk of coronavirus infection passing between passengers on a full commercial flight. This drops to 1 in 8000 if the middle seat is left empty.
116 in 1000 – number of people in their mid 70s and older who will die if infected by the Covid-10 virus. That compares with less than 1 per 1000 for people under 50.
2 X – men have about twice the risk of death from Covid-19 compared with women.
On this last one I have read that it is women who are more vulnerable to Long Covid, that is long term side effects.
It is a really miserable day today, wet and cloudy, not a day to lift one's mood.
It feels like Friday and time seems to be dragging and I somehow lack motivation today.
Sending love and best wishes.
Sylvia xxxx
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Hello Helenlouise,
Thank you very much for taking the time to fill in the details about your treatment. It was very helpful and I read it with great interest. I do hope you will have good news at your next appointment and that you will have time for a lot of relaxation and enjoyment.
Take care and keep in touch.
Love and best wishes.
Sylvia xxxx
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Hello
Hope everyone is fine and keeping safe. I was not well as I had typhoid but much better now.
Here the situation with covid is not good. We had few cases in our locality but all were home quarantined and did not require hospitalization. The government gives us numbers but we don't know what to believe.
I had my yearly follow up of mammography and other tests. All clear so far by God's grace.
Kind regards to Sylvia, Gill Mary and others.
Take care
Love
Jags
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Hello Helenlouise,
Your treatment list must be a record. Mastectomy is often seen as overkill here too. I was offered a lumpectomy, but my research told me otherwise. Even with a mastectomy my margins were narrow.
Wishing you the very best of luck with your next appointment.
Take care - and now that everything's growing again in Australia, happy gardening!
Love,
Gill xxx
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Hello Jags,
I'm so sorry that you've been ill with typhoid and hope that you've fully recovered.
In the UK we have daily reports on Covid infections and deaths. The UK isn't doing well and the National Health Service will soon (once again) be unable to cope with those patients who need to be hospitalised with Covid at the same time as those who need to be treated for cancer and other serious health issues.
The last time I looked at a coronavirus graph for New Delhi I saw a sharp rise in infections towards the end of October, so it's a relief to hear that the rate in your location is low.
Congratulations on your clear tests and mammogram. Good news always welcome!
Love,
Gill xxx
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Hello Sylvia,
That was a very interesting post. I've always enjoyed looking at statistics in regard to almost anything really. I had thought that the chance of being infected with Covid on a commercial flight was much higher than 1 in 4000 because even with the middle seat left vacant, people are so close in an enclosed space. I knew that men had twice as much risk of death compared with women, but hadn't realised that women were more likely to suffer from Long Covid.
It seems that we may all be back in lockdown again next week, why not now? . I think it would have been better to have had a 'circuit breaker' lockdown across the UK much earlier. Surely the Government could see that infections were out of control? I do appreciate that none of this is straightforward and that damage to the economy is an issue. Nonetheless, Johnson is Prime Minister and needs to be decisive and stop the confusing messages. 'We may be back in lockdown' isn't good enough
Kier Starmer needs to be more aggressive in his stance, particularly at PMQs. I think he's right to start the process of cleaning up the far left of Labour at an early stage though. People are very worried about 'Labour' being synonymous with 'Communist' thanks to the far right press. This has made it unelectable and in order to build a fairer society, the Labour Party must first be elected. I had hoped that Labour would be a new Enlightenment of sorts!
We don't hear much about how European healthcare systems are coping with the increase in Covid patients at the same time as other life-threatening illnesses. France is in a very bad way regarding its surging rate of coronavirus. It has an efficient health service, as does Italy and Germany, so it would be interesting to know if cancer diagnosis /surgery is falling behind in these countries too.
It's raining here and a bit depressing, but not cold at 15C.
Wishing you both a peaceful weekend.
Love,
Gill xxx
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Hello Jags,
Thank you for popping in to say hello to us. It is most appreciated. The thread is very quiet and Gill and I are the main posters. I am not sure what is happening to Mary, but I think she may have left us. She seemed not to post regularly like she used to now that she has a puppy. Helenlouise, who is dealing with a lot with her cancer journey does pop in regularly and keeps us updated, as does adagio in Canada. We have not heard from Kath in a while, but I imagine she is very busy in Australia with her work connected to the coronavirus and the flu. As for Marias, in Colombia, South America, I think she is not very well at all and dealing with some serious problems.
I was sorry to read that you have had typhoid but very glad to know that you are feeling much better.
We all seem to be in the same situation with the coronavirus. We have numbers thrown at us but I do not have faith in their accuracy. We are in a lot of trouble, especially in England, and we need to get into complete lock-down without delay, but our Prime Minister is always delaying. It may not happen on Monday. We are not far off the point where there will be no room in the hospitals for even Covid patients. It is not surprising because we have had bed cuts and lack of support for the NHS for over ten years.
I shudder to think at what is going to happen to cancer patients.
It was so good to know that you hve had the all clear from your mammogram and other tests. Keep up the good work.
Do you do anything in particular to keep yourself well and healthy to keep cancer at bay?
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hello Gill,
I am glad you found the post interesting. Statistics are often interesting and enlightening.
I have been expecting Boris to change his mind all week and to say that we are going into a complete lock-down (which will not be complete!) but he has allowed another weekend to go by. I think we could have been in a different position had he been more proactive back in March. He cannot seem to understand that the higher the number of cases are, the more difficult it will be to get them down. The tier system has been a failure. Whatever is brought in there are too many exclusions to the general rule. I think he will act now, because from the very beginning he has been trying to protect the NHS above all, and not reveal how it is the victim of ten years of Tory cuts and austerity. They did not prepare for a pandemic and did not have the required protection gear etc. Goodness only knows where we are going! Where I am we are in tier 1 so we are not considered to be in danger, so we need lock-down now, while cases are low, and it easier to bring them lower than it will be as numbers increase and we go to tier 2 or even 3.
Of course, we do have to think of the economy, but it is up to the politicians to sort it out. I do not believe that we are all in it together and I do not believe in one nation Tories. They are not a party of ordinary people but a party of the Establishment, the rich and the powerful.
I am disappointed in Keir Starmer and think he is just another Blairite. Remember, Mrs Thatcher referred to Blair as son of Thatcher and they did carry on in much the same vein and got us into PFI and Trusts. The Communism thing is just simplistic scaremongering. There is nothing wrong with social democracy and peace.
I think that the French health system was very good, but just like our own has been subjected to cuts. My information is that Macron cut 7,000 hospital beds from the health system. I do not know about Germany but it always appeared to be very good.
This past week I went back to page 1 of this thread and read through ten pages. It brought back memories of some really interesting women that were posting. I also found that I had put a lot of information there back in 2010 and it made me realise how much time I had spent on doing it. I do wonder what happened to all those women. I also read the first ten pages of Calling all TNs and that also brought back a lot memories.
It has been another dismal day here with the weather and certainly not one for going out.
I did watch Dateline London this morning on the BBC Channel. It is always interesting but it is too short for the serious issues discussed.
Have you found any interesting books on cancer in general and breast cancer in particular lately? Way back when, there seemed to be so many. I was having thoughts about how much actual progress has been made in this respect since 2005 when I was diagnosed. I definitely thought that TNBC was in the Dark Ages then.
That is about all for now.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Weather here is very windy, which is always a worry when there are so many old trees in the garden.
The lockdown was inevitable with so many new infections at this very early stage of the colder months.This isn't a complete lockdown, there are far too many exemptions. I dread to think what will happen when seasonal flu kicks in. As you say, so many years of cutbacks has resulted in an NHS unable to cope, even in normal times. The extra strain of Covid is a disaster. As if life threatening illness wasn't enough to cope with, without patients looking forward to a dangerously long wait for treatment.
I've had a look at Chris Woollam' article on Statins and survival rates for breast, colorectal cancers and melanoma. Research funded by Australian Health Authorities found evidence that statins, particularly lipophilic statins like Atorvastatin and Simvastatin, increased survival in women for breast and colorectal, particularly. They helped, but were less effective for melanoma. The cohort was aged between 18 - 89, all had survived at least one year after diagnosis and the study lasted from 2003 - 2013. There were 20,046 participants with breast cancer. The longer women had taken statins before diagnosis, the greater the survival rate.
I occasionally go back through the thread and read earlier posts I don't think much has changed for TNBC. Radiotherapy is more targeted and I haven't met anyone in the last decade who has been left with an arm that no longer functions following treatment. There are small changes, but not the breakthrough that we'd hoped for. In the UK, funding for cancer research has fallen dramatically since the pandemic. We have to hope it will pick up again once we have some sort of control over Covid.
That's about all for now.
Keep well.
Love,
Gill xxx
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