Calling all triple negative breast cancer patients in the UK
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Hello Sylvia,
Just very short posts for the next few days. The weather is dreadful here, wet, cold and grey, typical for October.
My trip to the dentist went well and I didn't need to lose a lower molar after all. Instead the base, just above the gumline, was drilled out and filled with ceramic. No more pain when eating. It all ended in drama as when the dentist raised the chair I became horribly dizzy and nauseated. He understood and quickly lowered the chair again and raised it very slowly and in stages. After this adventure we drove home and I went outside to empty the kitchen bin, fell over and damaged my ankle - I heard a crack as I went down and an excruciating pain. Fortunately, I landed on the (soaking wet) lawn and just waited to be rescued. Michael didn't hear me shouting for a good five minutes. Today my left ankle is bruised and swollen, but at least I'm able to hobble around.
I noticed that some NHS doctors are calling for surgical beds to be ring-fenced for treatment other than Covid. They're also asking for more theatres to be made available to prevent waiting lists from growing any more out of control. We shall see what happens.
Hope yor week got off to a better start than mine!
Take care,
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post and I am so sorry to read that the week has not started well for you and that in addition you are having horrible weather.
I was interested in how you were able to avoid losing your lower molar as I did lose mine. I did not realise that under Covid regulations dentists could use drills because of the aerosol that forms.
I was sorry to read that you became dizzy and nauseated and thought it might be the anaesthetic. Alls well that ends well as far as the dentist's visit is concerned.
How unfortunate that, having got home safely, you went outside to open the kitchen bin, fell over and damaged your ankle. I do hope you have not fractured your ankle. Will you see the doctor?
I listened very carefully to the news about the NHS and care of patients other than those with Covid-19. It would be good if this really happens, but I am a bit sceptical. We know there is a dire shortage of nurses and doctors and we also know we need more hospitals. Boris is still promising these but like the queen in Alice in Wonderland, these promises are always jam tomorrow but never jam today. I have not seen any sign of any of these promises being carried out.
Yesterday on the news I heard that some patients will be sent to places in High Streets for blood tests etc. Is this what will be done with the empty shops? It is not very professional and I do not think it is the way we should go with the NHS. It would be much better to be sent to our GPs.
All this seems like a scheme to make lists of patients waiting for treatment etc. look better but in fact they are not.
We have not done much these past two days except routine chores. It rained a lot yesterday, but today has been drier but the wind stronger. Raymond and I walked to our local Co-Op and back, which is about two miles. Just now we had our Tesco delivery so we know that panic buying has set in.
Yesterday we watched Renegade Inc on RT. It is an interesting interview programme and is for those who think outside the box! It was on at 9:30 pm. Before that we watched Crosstalk Rules with Peter Lavelle and is a meaningful debate programme. This is also on RT at 8:30 pm, Monday, Wednesday and Friday.
That is about all for today. I do appreciate your taking the time to post in when you are busy, have visitors and have had a bad start to the week. Remember things can only get better!
Love and best wishes.
Sylvia xxxx
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Hello everyone,
I have just noticed that we have now reached 500 pages on this thread. When I started it I never imagined that it would keep going to this extent and still be going after ten years.
If any one has any questions about surgery, chemotherapy, radiotherapy, medication, healthy eating and so on, we are only too willing to help.
Love and best wishes to everyone.
Sylvia xxxx
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hi everybody
i,sick all my right side is ñike a have a acv next week is my petscan. i hope evebody is ok.
abrazos
marias
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Hola Marias,
I was so glad to see you back on the thread when I opened up the computer this morning.
I was very sorry to read that you are not feeling well and that you have problems on your right side.
I do hope that you will have good news from your scan next week. Let us know how you get on.
I thought of you this week when I bought some avocados and some other fruit and noticed that they came from Colombia.
I am sure everybody here will be glad to have heard from you.
Take care and keep being optimistic.
Abrazos.
Sylvia xxxx
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Hola Marias,
Me alegré mucho de verte de nuevo en el hilo cuando abrí la computadora esta mañana.
Lamenté mucho leer que no se siente bien y que tiene problemas en el lado derecho.
Espero que tenga buenas noticias de su escaneo la próxima semana. Háganos saber cómo le va.
Pensé en ti esta semana cuando compré unos aguacates y alguna otra fruta y noté que venían de Colombia.
Estoy seguro de que todos los aquí presentes estarán encantados de haber tenido noticias tuyas.
Cuídate y sigue siendo optimista.
Abrazos.
Sylvia xxxx
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Hello Sylvia,
Weather not at all bad here today, not sunny but not wet. I'm confined to home with a very painful ankle, I've given myself until Friday, if it's no better by then I'll go to A&E for an x-ray.
Like you, I wonder if my dizziness was caused by the local anaesthesic injections. It could just have been the angle of the dentist's chair, my head was lower than the rest of my body . Ever since chemotherapy I've experienced dizziness when leaning over to look under a piece of furniture or a garden shrub etc. My dentist only uses his drill in certain circumstances. For me it was either that or lose a tooth. I wasn't charged extra for PPE and the whole experience felt very safe. The outside door is locked and patients have to knock before being let in by the receptionist. They are taken straight into the dentist, no sitting in the waiting room is allowed. All very similar to visiting my hairdresser and quite depressing really, I hadn't realised just how important casual conversation and seeing people smile was to me until Covid struck. We're so fortunate not to be alone at home, those who do live by themselves must be finding life very difficult.
Matthew Hancock has said that cancers may not be treated if coronavirus becomes out of control. What an astonishing statement. The Government has had since the beginning of March to prepare for a Winter surge and Nightingale Hospitals were built for this very purpose. Tory backbenchers need to organise themselves properly and join forces with the opposition on this health catastrophe. My heart goes out to all those people waiting for treatment and those yet to be diagnosed.
Have to stop here.
Enjoy your day.
love,
Gill xxx
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Hi Marias,
It's a relief to hear from you. I think we have all seen the news about the ever worsening situation in Colombia. I'm so sorry that you have to be caught up in this at a time when cancer is causing you so much pain and heartache. I do hope that your scan shows a way forward for you and that a new treatment can be offered quickly to help with the pain on your right side.
You are in my thoughts and in my prayers.
With love,
Gill xxx
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Hello everyone,
Just checking in quickly while I have some time.
The UK is experiencing a significant rise in Covid infections and the number of deaths is rising again. Some NHS hospitals say that they will be at capacity within a week as more people are needing hospital care for Covid symptoms. Hospital waiting lists for cancer surgery have been growing out of control since the virus struck. I'm not sure what the status for breast cancer diagnosis, surgery and treatment is at present. In my area, the wait for b/c chemotherapy is about the same as it usually is - I asked the chemo nurse about it when I had my six monthly Zoledronic acid infusion, but those who are waiting for biopsies, scans etc may not even be on the chemo waiting list. Very much hoping that things remain stable for healthcare services where you are.
Weather here is about average for October - grey, cold and damp. I envy Kath and Helenlouise who should be enjoying the warmer weather by now.
Take care everyone, especially those of you still having treatment or waiting for surgery.
Gill xxx
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Hello Sylvia,
I see from the weather forecast that you have a reasonably good weekend ahead Dry, not too cold and the sun should be out tomorrow. Hope that you and Raymond are able to find the time to enjoy a walk together.
I'm still waiting for the results of my scan, I was told three weeks, but so much is falling behind now. I'm not sure how accurate mri scans are. I doubt if they're capable of showing up small clusters of stray cancer cells or we'd all be offered one soon after completing our chemotherapy. I was disappointed to hear how unreliable testing blood for cancer markers was - at least in the case of breast cancer. Why are so many people, usually in America, given them I wonder?
There's a short series called 'Life' on BBC iplayer. Peter Davidson and Alison Steadman lead a superb cast. It isn't for anyone who's squeamish about swearing, but otherwise very watchable. There's also a documentary about Harold Shipman, it does repeat itself a bit, but it hypothesises as to why Shipman was able to get away with murdering so many people quite openly. It seems the fact that older people are often healthy, active and leading very full lives was overlooked time and time again. The ageism so prevalent in our society really supplied him with a licence to kill.
I shall end on that happy note!
Look after each other.
Love,
Gill xxx
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Hello Sylvia,
I'm just wondering if all is well? You're probably snowed under with things to do, so please don't respond if that is the case. It's not like you to be away from the thread for more than two or three days so can't help wondering if you and Raymond are ok.
Love,
Gill xxx
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Hello Gill,
Thank you for your two posts. I did read the first one that you posted to everyone and I want to say thank you for making such an enormous contribution to the thread. I was waiting to see if any one else responded to that post and I was disappointed to see that no one had.
Thank you for your post of October 10th addressed to me. It is true that the weather was not too bad here on Saturday in the morning but Raymond and I just did not feel like going out for a walk. The afternoon got disturbed because one of the residents here who is very elderly and lives alone, had problems with her pendant alarm system and we went to her rescue. This year, with all that has happened with Raymond, has made us feel very tired. This, in addition to the coronavirus, has been very wearing. We are not looking forward to autumn and winter, especially as the virus is getting worse rather than better.
Like you, we are very concerned about the toll the virus is taking on the NHS and the fact that cancer patients are suffering. We have just watched the latest statement from Boris Johnson and the three tier system, and wonder whether it will work. Devon will be in the first tier, and yet the statistics in Exeter are shocking. We wonder whether we should be going back to the procedure we had in March. We are going to look at the address to the Nation by Boris Johnson at 7pm but do not expect much other than his usual waffle and boasting.
I was very sorry to read that you have not had the results of your scan. I do hope you will get them soon, as all this waiting is unacceptable. I am not sure about how effective MRI scans are for spotting cancer cells. I was certainly not offered one, as I have said before, I was given a CT scan and a bone nuclide scan before and after treatment. I do not know if everyone was offered these scans at the time. I think I was given them because of the high blood calcium levels in the blood which can indicate spread, and I suppose the bone nuclide scan to see if there was spread to the bones. Nowadays scans seem to be offered all the time and I do not know whether it is because they are useful or whether they give them because they can. Both CT and bone nuclide scans expose a patient to radiation and that is not good.
As for blood tests, as I have said before, my oncologist did not think they were useful amd said they were only good for the day they were taken.
In the US I noticed, when I first started posting on TNs that the American women were tested much more than in the UK. I do not know whether this is a good thing or not. They have a different system based on insurance, ability to pay and for insurance and big pharma to make big bucks. The NHS was not originally based on making money, but I fear we might be going that way.
Thank you for the information about Life and the documentary about Harold Shipman. I think all elderly people have to be very wary about how they are being treated in society in general and with GPs and hospitals in particular. There is far too much ageism. There are too many assumptions about what you must be like after a certain age. It is about time this stopped. Raymond went through this in hospital when it was assumed because of his age he must be deaf and so a nurse took to shouting at him because she thought he could not hear! I kept a strict watch on everything that was going on. I checked everything written on notes, asked for interviews with doctors and in the end had to complain. Another problem was the assumption that, because Raymond was in hospital for heart problems he must have high blood pressure, so they gave him medication to lower it and consequently stopped his heart for about ten seconds, and I think he is lucky to be alive.
I do wonder where out thread is going, if anywhere. It seems to be the two of us posting at the moment. I was having a think this weekend after talking to a friend of mine here, she has been a breast cancer patient since 2000. She was, at that time, diagnosed with hormonal breast cancer, had a mastectomy, chemotherapy and radiotherapy,, and then went on the usual anti-hormonal medications. About 2013 she developed metastases to the bones and has been on and off oral chemotherapy mainly ever since, with a few rests. She is slim, walks and walks, runs and has done quite a lot of half marathons and yet she developed breast cancer. Talking to her about her oral chemotherapy and the fact that the medications she has had, made me wonder why oral chemotherapy cannot be done now from diagnosis, especially because oral chemotherapy does not seem to cause hair loss, at least not with my friend.
Some of the chemotherapy drugs, still used routinely, are very old and I wonder why they cannot be replaced. I think the oldest one is doxorubicin (Adriamycin).
That is about all for now. Thank you so much for your dedication and make sure you look after yourself and Michael.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
It's a relief to know all is well. I quite understand why you and Raymond didn't feel like going out for a walk, this cold wet Autumn weather is making a bad situation (Covid) worse for many of us. It's well documented that Mental health problems are rising quickly among younger people, but my feeling is that older people may be affected just as badly. Unfortunately, we were often brought up to keep quiet and just get on with it, talking about depression and anxiety was perceived as a weakness. This is changing, but nowhere near fast enough. Growing older is very difficult for so many, especially if they're alone. Depression after cancer needs to be addressed too.
It has been reported that SAGE - Scientific Advisory Group for Emergencies (for those living outside the UK) - asked the Government for a lockdown weeks ago and was ignored. As the hospitals fill up with Covid patients again, cancer surgery will inevitably slow down. I know how frustrating this is for all the medics concerned with cancer treatment. They are blameless, but frightened patients are becoming angry with both doctors and the NHS. There's a great deal of unrest at the moment, it's a concern.
There are too many who deny that Covid exists or does exist but is no more than a cold or seasonal flu. The shops here won't allow anyone in if they're not wearing a mask, but we still have plenty of people who ignore social distancing, hand sanitising or the rule of six. Three students at the University of East Anglia have been fined £10,000 each for holding a student houseparty, so much for protecting the NHS and those waiting for treatment.
I hope someone on here will drop in to explain why oral chemotherapy isn't the norm, rather than IV chemotherapy. Kath might know. I guess that there must be a good reason as oral chemotherapy would save health services a lot of time and money.
The scans you were offered at Exeter Hospital don't appear to be generally available in other areas, or at least not since I had my diagnosis. No doubt I would have been offered a bone scan had my calcium levels risen. I'll be having a six monthly blood test for the next twelve months just before having my Zoledronic acid infusion. The three years of treatment with Zometa may change to five years if NICE agrees. At least the blood tests give me some peace of mind regarding possible bone mets.
Hope there are no further issues with residents needing help this week, though the colder weather usually brings its fair share of problems. My chimney is still blocked so no heating except for a couple of oil filled electric heaters. Visiting a warm department store for a hot drink would be appealing if it weren't for Covid and my sprained ankle. What a horrible year for us all!
Take care both of you.
Love,
Gill xxx
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Hello Sylvia, Gill and friends,
Just picking up on your comments about scans. I think routine scans (to check for cancer) are done far too often and at great expense to one body (all that radiation) and to the system. If the patient isn’t paying directly, we all do through insurance. There is the thought that knowing ASAP about metastasis is very important for quality of life and to the outcome whereas many studies state overall survival is not increased. Whilst the later seems counterintuitive, I don’t want to end up with some other form of cancer because I have been dosed with radiation more than required. My MO has said we now work with clinical examinations and symptoms. Having said that I get a gated heart pool scan once every three months because herceptin is known to impact the heart. Before each MO visit (now once every three months) we do bloods as well. I was told I don’t have markers in my blood for cancer so I don’t have that measure. It seems to be used extensively in the USA.
I have treatment again this Thursday. Three weekly seems to come around very quickly.
I hope everyone is well or doing as well as possible xx
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PS. I note that this topic in the TNBC is now on page 500!
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Hello Helenlouise,
It was nice to hear from you.
I do think that routine scans are being done too often as a general rule, but I am concerned in the UK that cancer patients are not getting enough attention. I am not sure what the scan routine is for breast cancer patients in the UK nowadays when times are normal. There seem to be a lot of MRI scans in use in hospitals. I think I had a CAT scan and a bone nuclide scan after diagnosis and before I started treatment, because the oncologist and breast cancer surgeon were concerned that my large tumour, 6+ cms, had spread because of my high calcium blood levels, which can be a sign of spread. They found all was clear from the scans and so they did a blood test for high parathyroid hormone and found that was the cause of the problem and told me I had hyperparathyroidism which would need surgery, but that they would get me through the breast cancer first. I had the same two scans post treatment to check all was clear, but I never had any more scans after that.
I do agree that all these scans cost a lot of money.
I am convinced that the melanoma cancer mole on my right arm that was discovered in 2017, was a result of my three weeks of radiotherapy with boosters.
When I was treated for that and all was in the clear, one of the nurses told me that cancer patients can develop sarcomas of the bone years after treatment.
I feel that the less treatment a person can have to bring them to no evidence of disease (NED) the better. I have friends here who are breast cancer survivors as I am but we all have experienced cancer in different ways, according to treatment. I am the only one around me that had the tumour status of TNBC.
I do understand about Herceptin because one of my friends was triple positive and had quite a lot of Herceptin.
After treatment most of my check ups were just physical ones and checking up on how I felt. I kept mammograms to the minimum.
As I said to Gill, I do get the impression that in the US there is a great use of scans, blood tests etc.
I do hope all goes well on Thursday,
I do remember how quickly the three weeks treatment came around.
Keep doing well and keep safe.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
Thank you for your latest post. I shall answer it tomorrow.
Did you, by any chance, see Dispatches on Channel 4 last night? The way cows are treated in the US in big feeding lots of 40,000, fed on corn meal, no grass and no freedom, to fatten them for eating, and all the deadly hormones injected into them was horrifying. All that will be passed onto humans.
Talk again later.
Love and best wishes.
Sylvia xxxx
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Hello Helenlouise,
I think many of the routine scans that used to be offered here after a breast cancer diagnosis are no longer considered useful. I was surprised when the surgeon told me that my annual check would only comprise a mammogram on the right side and just an examination on the left mastectomy side. I'd expected, but didn't really want, an ultrasound scan. Some of the larger London hospitals offer more tests, probably because they have more cash, but I'm happy to have avoided unnecessary extra radiation.
I'm very glad that your hospitals are able to continue treating you as normal, despite the pandemic. Good luck on Thursday.
Take care.
Love,
Gill xxx
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Hello Gill,
I do agree with you that the Covid situation is getting to all of us and I think it must be awful for elderly people living alone. I also agree that growing older is probably the most difficult part of life. I see so many elderly people who are really struggling.
I have been listening to all that news as well about how the government has not been following the advice from the scientists. Boris Johnson does not listen to anything. He is too busy mouthing off! I watched Prime Minister's Questions and was disgusted with it. I think it is a waste of time, because the Prime Minister does not even attempt to answer questions and is often rude and should be sent out of Parliament! I do wonder how long this sham parliament can go on. It is totally lifeless and I think often now they are not worthy of our votes and they are definitely earning too much money.
As for my treatment at the Royal Devon and Exeter Hospital in 2005/6 and then ten years of after treatment check ups I think the hospital was not as overwhelmed as it is now. Nothing will change while we keep increasing our population. This morning I was talking to one of our gardeners here, who has a seriously ill wife, and he was telling me that she had had her appointment cancelled five times. It is unbelievable.
I do hope you will be able to get your chimney unblocked very soon, because I have the feeling that we could be in for a harsh winter. I took our gardeners some tea and biscuits this morning and I could not believe how cold it was. I do hope we do not get any snow!
I do wonder where we are going with breast cancer. It was in the past described as a disease of old age, but I keep reading on some of the threads about patients and they are very young and I wonder why? It has to be something to do with lifestyle, the Western diet, the environment and the stress of everyday living.
I still read about risk factors for developing it and they seem to be the same that were mentioned to me when I was first diagnosed, such as, periods starting at an early age, late menopause, not having had any children, having had your first child at a late age, family history and so on. I was re-reading in my medical book recently that current theories regarding the causes of breast cancer are focussed on hormonal and genetic influences, but that the principal risk factor is age and the woman's chance of developing the disease doubles every ten years of her life. That does not explain all the women in their twenties and thirties that are getting it. Another risk factor mentioned is for women who did not breast feed long-term. Of course, there is the usual mention of obesity and moderate to heavy alcohol intake. Another risk factor, well known now, is hormone replacement therapy (HRT) and apparently the risk increases with the length of time HRT has been taken.
There is the genetic factor but this is thought to account for less than about 5% of all breast cancers.
I think we all know about BRCA1 and BRCA2 genes but there is also the TP53 gene. I know younger women with breast cancer can request genetic testing but I do not know how frequent these tests are in the UK.
It is important for women to know their breasts and to look for symptoms and signs of the disease. I shall try to write about that another time.
Last night I found an interesting programme on 5 Select. It was a comparison between Henry VIII and Donald Trump. It was a serious programme with comments from historians.
That is about all for now. Let us hope that some of the other members of the thread will join in soon.
There is a programme over the next three nights on Colombia. It looks interesting. I need to look up what channel it is on as I cannot find it at the moment.
That is all for now. Take care.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
A much brighter day here, but intermittent showers spoil it. The chimney specialist came yesterday, climbed on the roof and lowered a camera down the chimney. The blockage was a huge build up of tar which the last two sweeps had failed to notice. It took over an hour to clear. The log burner is now on, the cottage is warm and the cats have forgiven us.
Like you, I've noticed an increase in younger women with breast cancer. I did some quick research. Seven years ago, the NHS reported that breast cancer in the under fifties was at a record high, with 20% of women diagnosed being in this age group. The situation is likely to be worse today if personal experience and this site is anything to go by. Apart from hormonal risk factors and obesity in ER+ cancer, alcohol also plays a significant part. Cancer Research UK suggests that each additional unit of alcohol per day can increase the risk by 7% - 12%. However, hormones have a greater influence. I didn't watch Dispatches as I avoid programs about animal cruelty, but what you said about animals in the USA being injected with hormones should be a warning to everyone. This is being forced on us by our thoroughly incompetent, criminally negligent Government. Hardly surprising the Tories want to do away with food labelling.
I despair of Prime Minister's Questions and also of our appalling Speaker. He even sniggers along with Johnson, terrified to challenge him after trying to force the PM to apologise for calling Starmer an IRA sympathiser. What a national disgrace Parliament has become.
I had to laugh at the idea of Henry VIII being compared with Trump. Both experts in self-publicity and manipulating the truth. You don't need to look very hard to find similarities between Henry and Mr Johnson either. Both serial womanisers, both the laughing stock of Europe and both keen on using tax payers cash money for dubious ends. Apparently, Henry VIII enjoyed celebrating Christmas so much that in the first year of his reign he emptied the Treasury.
That's all for now.
Keep safe and well,
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post. I always read everything you say with great interest.
It is a gloomy day here and one that lowers a person's mood. This, coupled with the coronavirus and the state of this country in general, makes feeling optimistic quite a challenge.
I think that in general people in the UK need to look after themselves better. I am appalled when doing the on-line shopping at all the processed and over processed 'food' that the supermarkets are pushing. It is beyond belief that a simple healthy product such as an apple or a tomato, can be processed in so many ways and to end up having no nutritional value. It should not be allowed. I think people need to shop with more care and attention.
I think that when it comes to cancer there is not enough focus on the cancer causing state of the environment. We can try to control what we eat and to make sure we exercise and do not put on weight, but trying to control the environment we live in is a different kettle of fish. Too many household chemicals are also being used. I shudder to think what harm is being caused by all the spraying that is going on because of the coronavirus.
I think that cases of cancer are on the increase.
That is about all for today.
Sending love and best wishes,
Sylvia xxxx
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Hello Sylvia,
Very wet here today, but yesterday was sunny and warmer than usual. I have a hair appointment early this afternoon, another opportunity to find a style that will work to disguise the very thin patches I now have at the sides around my face. I would strongly advise women to ask their oncologists if the chemotherapy they're offered could cause permanent alopecia. I wish I'd been offered Paxlitaxel instead of Docetaxel - they are equally effective, but Docetaxel can cause permanent hair loss/thinning in some women.
Still don't have my mri results, it will be a month on Friday. There seems little point in GPs ordering urgent tests if the service is so short staffed that results are delayed for more than two weeks. This has been a growing problem in the NHS long before Covid appeared.
I wonder if others on the thread have experienced dizzy spells or issues with balance over a year after chemotherapy? It's very difficult to achieve some sort of normality with so many deficits suddenly appearing months, or in some cases, years after treatment.
Covid infections and deaths are rising every day, just as expected. I find it difficult to believe that cancer surgeries /treatments will avoid further delays. Norfolk is still in tier one as infections are low compared to much of the UK, but hospital outpatient services have slowed down so much that I can't help but conclude that a good many people are missing out.
It's very quiet on the thread again.
Keep well both of you.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post.
I think it would be very difficult for oncologists to give out definite information about chemotherapy treatment and possible baldness. We all react differently to our chemotherapy drug treatment and a lot may depend on the health of your hair before treatment. If you have been having your hair dyed or permed or been an inadequate diet, who is to say what is going to happen?
As for the taxane drugs, docetaxel (Taxotere) or paclitaxel (Taxol) I doubt if there is much difference or if you could get a consensus. When I was going through treatment docetaxel seemed to be used more often in the UK and paclitaxel more often in the US. I remember reading they both came from the yew tree but from different species in the UK to the US.
I remember my oncologist telling me that she was giving me docetaxel because it was less harmful on the heart.
The other drugs used also caused hair loss. I was told that I would start to lose my hair quite soon after the first dose of my chemotherapy treatment and that was epirubicin (Ellence) and cyclophosphomide (Cytoxan) and that when I came three weeks later for the second dose I should be prepared for wearing my wig. This is exactly what happened.
I was sorry to read that you still do not have your MRI results after nearly a month. All you can do is keep pushing. I do agree that there were serious problems in the NHS long before the coronavirus but this virus will now be blamed for everything going wrong in this country, including Brexit!
Let us see whether anyone replies to your query about dizziness and balance related to chemotherapy. Remember, that dizziness can be caused by lots of things and that loss of balance is very common as people age. These are things that you need to discuss with your doctor.
As for your hair, you might like to try the hemp treatment shampoo in the Dr Organic brand at Holland and Barratt. There is a separate treatment shampoo and a conditioner shampoo.
As for coronavirus the south west is in tier 1, but Exeter is a lot worse than elsewhere. I think that unless we have a national lock-down we shall be playing swings and roundabouts for a long time. In the end I think we shall have to resume a normal life and let the virus work it way through and out. The government has messed up.
I missed PMQs today because too much was going on here. Did you see it?
It is very disappointing that the thread is so quiet. I have noticed that most of the threads on TNBC are created and disappear quite quickly. The enduring ones have been Calling all Tns and out one and they were both created back in 2010. I do wish Titan would pop in to let us know how she is doing. If I had not started posting on her thread I would never have created this one.
That is all for now. The weather has been miserable and very uninspiring.
Love and best wishes.
Sylvia xxxx
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Hi Sylvia, Gill, Mary and all,
Just a quick check in to keep you up to date - I finally have a phone consult with a heart surgeon on November 3rd - I can have a face to face consult, but only if I request it and it has to come after the phone call. Crazy covid protocol. However, I am glad that I have a date even though it is only a small step forward. And I do plan on meeting the person who will be operating on my heart - I don't think they can refuse?
In the main I am doing OK - last night was not the best because I had weird noises during my exhalation and it was very anxiety producing - I phoned my family doctor today and he felt it was the noise from the heart murmur being louder because the valve is so narrowed - he did not seem overly concerned - unlike me. He said that occasionally the heart surgery has to be an emergency and that if I get severe shortness of breath and a squeezing sensation in the chest, that I have to go to emergency - well I would rather just go through the normal process of consultation and then elective surgery - but - that is out of my control. This is a very stressful time for me and I certainly want to avoid going to the emergency of a hospital especially since I would have to be there for several hours alone answering the same questions to way too many doctors and nurses. No visitors allowed - so that in itself will be a challenge.
Covid dominates peoples' lives here in Canada and it would appear that the only illness that matters is covid - and so many people are not getting the attention they need. I feel blessed and grateful that I have got tests done and a consultation all within a two and a half month period - however, it has seemed more like over 2 years.
Our little grandson arrived on October 14th - a home birth - Mom and baby are doing very well. We were able to hold baby Leo just a few hours after birth and we visited him yesterday again - he is the bright light in our lives at this time.
Sorry for not posting more, but I am somewhat distracted these days and trying to learn as much as I am able about heart procedures and the drugs used afterwards, so that I can ask intelligent questions. Some of the stuff I read, it would appear that the cure can sometimes be worse than the problem - makes me think of chemo and radiation - can help the cancer but often leaves us with other issues.
Best wishes to you all and thanks for your support and encouragement even though we are all miles apart. Stay safe!
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Hi adagio,
Good to know that you're safe and now have baby Leo to brighten up your lives. The arrival of a grandchild is one of life's greatest joys. Congratulations!
Hearing strange sounds when you exhale must be a frightening experience. Your doctor's response wouldn't really have helped to relieve you anxiety much! A telephone appointment with your surgeon may be useful, but like you, I'd want a face-to-face meeting. Body language is important - hesitation, concerns and doubts are much easier to read and ask questions about when you have your surgeon in front of you. You're a very well informed patient, your research has been thorough and you've faced up to the possible deficits of both surgery and the longer term after effects. You are as prepared as anyone could be and I'm sure your surgeon will appreciate your realistic approach.
Covid dominates our lives in the UK too. Our infection rates are rising rapidly and large areas are back in lockdown. Hospital appointments mean temperature checks, endless questions and of course no one to accompany you. An extra pair of ears or a note taker is out of the question.
Take everything a day at a time adagio. You will get through this, it's an ordeal, but you're a strong woman with a sensible approach to your condition.
My love and prayers are with you,
Gill xxx
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Hello adagio,
Thank you for your post and for letting us know what is going on with you. The procedure in Canada under Covid seems much the same as here. I do hope the phone consultation with a heart surgeon will be of help. I think you are right to want to meet the person who will be carrying out the surgery and I would say it is your right as the patient to meet the surgeon.
I can understand your anxiety about the weird noises you were hearing and what your doctor said was not very helpful. I would think it is better to get it done while it is not an emergency. I think it is awful that patients are being told they have to go alone. Raymond will not be attending any hospital appointments until I am allowed to be with him. I have made this clear to the hospital. I can fully understand the stress that you must be going through but hospitals seem unable to put themselves in the position of the patient. I think there are too many bureaucrats in our NHS system.
Raymond and I had a look at coronary artery bypass surgery, a video, and found it very interesting. I wanted to see what was involved and Raymond wanted to see what had been done to him!
By the way, Raymond made friends with another patient while in hospital and he was waiting for both the bypass surgery and valve replacement. The hospital delayed with him and he did end up being sent home and then having an emergency situation for which he had to be rushed to hospital and having the surgeries.
You mentioned about the drugs that you would have. Raymond and the friend he made, have kept in touch and they seem to be on the same medication. Patients seem to be on beta blockers, anti-platelets, aspirin, anti-stomach acid medication, blood pressure lowering medication and statins, or a mixture of these. Raymond has stopped taking all this medication except a low dose beta blocker and low dose aspirin. He has stopped the others of his own volition as they were making him feel unwell. We were quite annoyed that in hospital they seemed to be doing one size fits all and took no notice when he kept telling them that he did not have high blood pressure. We would be interested to know what medication they tell you to take.
Last night, just by chance, we found ourselves watching a programme entitled 999: Critical Condition and it was live in an A&E. A man was brought in after a couple of heart attacks and they carried out coronary bypass surgery, so we saw Raymond's surgery in the raw! It was quite something but we were amazed at the skills of the team.
I do hope you will get your surgery soon and that you will be able to get on with your life. It seems to me that two and a half months is a long time to have been waiting.
I think that Covid has sent everyone into a panic and it has been wrong to sideline other patients with life-threatening diseases such as cancer.
Congratulations on the birth of your little grandson. He will keep you busy and take your mind off other things.
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Very cloudy here today, but occasionally the sunshine breaks through and it's dry, which is a relief after all the rain we've been having. The stream running through the garden is filling up and the ditches would benefit from a few rain free days.
The reason why I'm annoyed about my hair loss is because I asked my oncologist this specific question. It was a possibility with Docetaxel and both doctors and specialist nurses would have been aware. Transparency is important, a lack of transparency will inevitably result in a lack of trust. I consider myself fortunate that most of my hair did grow back and the thin patches can be disguised. The loss of a breast is deficit enough.
I didn't listen to Prime Minister's Questions live as I was out on Wednesday but I did catch up with some of his 'answers' in the newspapers. He seems impervious to well founded criticism or to how he appears to the rest of the world. He has now admitted that track and trace isn't working. That is not enough, he and his wealthy cronies have squandered at best, stolen at worst, taxpayers money. Who will sue them? This vast amount of money should be recovered and put into the NHS.
Now that so many parts of the country are in Covid tiers 2 and 3 most hospitals have cancelled all elective surgery. I do hope that cancer surgeries will plough on regardless of local lockdowns. I wonder if you or anyone browsing on the thread knows anything about breast reconstruction operations which are so often done at the same time as mastectomies? Are these being delayed until Covid becomes more manageable or are women being offered temporary silicone implants which are very quick and require similar in-patient recovery time to simple mastectomy?
It was lovely to hear from adagio, I always wonder how she's getting on when we don't hear for a while. It would be good to hear from others too, even if it's only a very short post.
That's all for now.
Hope you and Raymond have a peaceful weekend and some dry, sunny weather.
Love,
Gill xxx
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Hello Gill,
I have just read your post and I shall answer tomorrow. I have been busy today catching up on paperwork both for the complex and our own.
It has been a miserably wet day, so ideal for staying in.
I see quite a few drugs being promoted here but I remain very glad that I have taken no drugs since finishing my standard breast cancer treatment. I am glad because all drugs take a huge toll on your body. I have just gone past 15 years and 4 months since diagnosis.
I shall talk to you tomorrow.
Love and best wishes.
Sylvia xxxx
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Hello Gill,
I was just wondering whether you and Michael had had a flu jab? Here in Exmouth there was a drive-in flu jab clinic with three surgeries merged and the medics under a tent.
There have also been clinics where you queue for a walk in flu jab, by appointment, and if you do not have a car. We did not like the sound of them. Do you think it is still possible to book individual appointments with a nurse at the surgery that is not part of mass clinics?
We are in a dilemma about having flu jabs. What do you think?
We do wonder where we are going with the coronavirus in this country. There has been so much messing around.
What do you think of all the drugs being pushed for TNBC?
That is all for now. I do wish the rest of the group would participate.
Love.
Sylvia xxxx
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Hello Gill,
I do understand about your annoyance over hair loss. I think that information on the whole will not come from the medical team unless the patient asks the questions. This was my experience over fifteeen years ago when I was diagnosed and I do not feel that it has changed much since then. I wrote out a whole load of questions when I was diagnosed and I was given answers, but I do not think I would have been given the information automatically. I was told that it was quite unusual to be asking a lot of questions and that most patients just wanted the medical people to treat them. I know someone here that seems to know absolutely nothing about the treatment and quite a few others who said they did not want to know details. When Raymond was in the hospital I asked many questions and had two sessions with his doctors, but I never got to see the consultant, because he did his rounds when it was not visiting time for families, and I found that rather aloof.
I do agree that loss of a breast is bad enough and that loss of hair is traumatic. As I said, my hair fell out after the first dose of chemotherapy (epirubicin and cyclophosphomide). My eyebrows and eyelashes disappeared during the docetaxel.
I have always said that patients must be fully informed about their treatment and make their own decisions about what they will accept and what they will not accept. Patients own their bodies, not doctors!
I do feel that Boris Johnson is not up to the job of Prime Minister. He does not listen, does not take in information and just waffles on. I just happened to be listening to Radio 4 early this morning about 5:45 to an interesting programme entitled Profile. This one was about someone called Edward Lister, a Conservative with a long history in politics. He is now 71 and worked his way into the Lords. What was of interest to me was that he is an advisor to Boris Johnson, along with Dominic Cummings. I got the impression that the two of them are really running the show behind the scenes. I did not like the sound of him.
Can you believe that this parliament has voted against feeding hungry children in this country? Where are we going? This is shades of Thatcher, milk snatcher. We now have Boris, food snatcher while they tuck into steak, subsidised by us, in their restaurants in the Palace of Westminster!
I do not know what is happening about breast reconstruction surgery done at the same time as mastectomy, but I suspect everything is being delayed. I do know that my breast cancer surgeon told me that a mastectomy operation took about 45 minutes, but that, if you had reconstruction at the same time, it made the surgery much longer. Reconstruction was not something that I ever contemplated. I seem to remember reading once that it was better to recover from mastectomy surgery and have reconstruction at a later date.
As for adagio, I am so glad that she does manage to find the time to keep in touch with us. I would think that she is going through a lot of anxiety while she waits for surgery. We all know from our own breast cancer experience that waiting is very stressful. Trying to keep busy sometimes helps.
Reading some of the other threads on the TNBC forum I see that lymphoedema has been under discussion. I was surprised that some posters were not aware of dry brushing. This has been around for sometime. I was told about it sometime ago. Instead of doing the manual lymph massage, light strokes along the arm etc., you do this massage with a brush. There are different opinions about this with some experts being in favour of it and others concerned about infection using it. Who knows where the answer really is?
I do agree with you that it would be nice if we heard from the rest of the group, more regularly, and if we had more new posters. There are too many just viewing.
It is another dull day here and not very inspiring. It is half term so there will be an influx of visitors which could make the number of Covid cases increase. I do think it is time to have a complete close down or open up everything and let life get back to normal. All this messing around is getting nowhere.
Love and best wishes.
Sylvia xxxx
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