Calling all triple negative breast cancer patients in the UK
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Hello Jags,
Very confusing Covid advice from our Government too. Hospital appointments for cancer surgery and cancer screening have been postponed, chemotherapy in my part of the UK seems to be going ahead. Agree with you, this must be a very difficult and frightening time for those who are newly diagnosed.
Good to know that you are safe and well.
Gill xxx
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Hello Gamb,
It was so nice to see a new name and post on the thread. It was good that having been reading the posts you decided to do a post of your own.
Thank you for the tip about how to deal with oedema. My husband said that the patient in the next bed was doing just that. I think that most of the oedema in the leg post-surgery has gone and that the feet and ankles are being particularly stubborn.
Thank you also for your congratulations on my fifteen years since diagnosis. I have not yet reached twenty years since diagnosis.
We would love to know a bit about yourself. Which country are you from? How is your treatment going? Have you finished it all? How are you feeling now?
Look forward to hearing from you agin.
Love.
Sylvia xxxx
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Hello Jags,
Thank you for popping in and many thanks for your congratulations on my fifteen years since diagnosis. I do hope it helps others reading and posting as if I can do it then so can others. In a way it seems a long time ago and in another it seems like yesterday, because the whole journey remains so clear in my mind.
I was sorry to read that all your appointments have been cancelled. It is so bad psychologically for patients. It is much the same here and I do not know how it will ever get sorted out. I think our government is getting ready to reduce two metres to one. It may make a bit of a difference but I do not see how it will get our children back to school or that it will help shops to any great extent. I think that compulsory wearing of masks everywhere could be brought in and I think this will create other problems. Our country seems to be a nation of litterbugs so I think we shall be finding discarded masks all over the place. I do not think they are very hygienic for the wearer.
We do get news of what is going on in India so I know there are many problems both with the virus and politically.
I do hope everything will improve soon but in the meantime look after yourself and keep safe.
Love.
Sylvia xxxx
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I apologise, i typed 20 years, congrats on 15 years,
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Yes congrats Sylvia. Very inspiring and just great news. Xx
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Hello All
I don't post much anymore, but I do lurk. I've passed my 5 year mark, going my 6th cancer free. I had triple negative inflammatory breast cancer. A beast. I'm left with some mobility issues, but have many days where I don't think about breast cancer at all.
Congrats Sylvia on 15 years NED. You are an inspirations.
Wishing everyone well.
Val
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Hello Val,
It was so good to have you popping in and to know that you have now passed five years since diagnosis and are heading towards your sixth year.
I think we are all left with some side effects, some worse than others but the big thing is that we have survived our breast cancer.
It is good that you are pass that time when cancer is continually on a person's mind.
Thank you for your very kind words to me.
It is good to know that we are all surviving with our different kinds of cancer and with the common receptor status of TNBC. I was glad that you mentioned your kind of breast cancer, inflammatory breast cancer, because I think the type of breast cancer often gets left out as patients emphasise the receptor status of their tumour. I had invasive ductal carcinoma (IDC) which os one of the most common ones. Our friend Gill in the group had the rarer one of metaplastic breast cancer and she did go through a lot. Someone I know has recently been diagnosed with lobular breast cancer but it is hormonal breast cancer and not non-hormonal.
Please continue to pop in when you can.
InspiredbyDolce (Debbie) pops in from time to time on the TNs and always mentions us as she spent a lot ot time in our group. Other old-timers have also been popping in.
Take care.
Love.
Sylvia xxxx
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Hello Helenlouise,
Thank you for your kind words.
Keep well, keep safe.
Love.
Sylvia xxxx
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Hello everyone,
The thread is very quiet again so I thought I would post some recent photographs of shrubs in bloom in our gardens.
This first one is popularly known as bottle brush but its name is callistemon.
The rest of the photographs are mainly various evergreen blooming hebes.
This is a hydrangea.
This is a lace hydrangea.
Large hebe and geraniums.
I am not sure what this is. I noticed it on the street where I live and I thought it looked stunning.
This plant seems to grow anywhere and is a good ground cover. If anyone knows the name please let me know. I have not been able to find it anywhere.
I hope our group will come back together soon and that we shall get new people.
Is anyone watching the programme tracing the history of Persia/Iran? It is truly interesting on BBC4. It made me think of Hannieh and I do wonder where she is and whether she is still in Iran, settled in Turkey or settled in Canada. Hannieh, we would love to hear from you.
Message to Mary, we are all missing you and hope you are fine.
Best wishes to everyone.
Love.
Sylvia xxxx
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Your garden is flourishing BeautifullSylvia. We have lots of bottlebrush in Australia and the birds love them. I love hydrangeas but don't have anywhere shady enough to grow. I should try some in a pot. Thanks for sharing xx
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Hello Sylvia,
You've worked hard on your gardens and they're absolutely stunning. The plant that seems to grow everywhere has the common name fleabane, but is more properly known as erigeron. It's also called seaside daisy as it prefers to grow in poor, dry soil and seaside type salty and windy conditions. Rabbits and goats dislike it. Goats are used in Cromer to keep the grass and weeds short on the slopes of the sea wall. They eat everything in sight except the erigeron.
It's always interesting to hear about other types of breast cancer which are also triple negative, like Val's inflammatory cancer. I don't know much about inflammatory breast cancer or its response to chemotherapy. We all know that triple negative generally responds extremely well while metaplastic is considered to be resistant in many cases. Val seems to be doing well and this will be encouraging for those with a similar diagnosis looking for positive stories.
I did take Lansoprazole for several years to treat heartburn. The pain before using a proton pump inhibitor was unbearable. However, as soon as I was able, I came off it. That was until chemotherapy when I used it on days 2 and 3 after treatment. I did know of the connection between Lansoprazole and C.Difficile, but was told that the many doses of universal antibiotics I was given during bouts of sepsis was the culprit. I don't blame the doctors, they did try to find the source of infection, but were unable to do so in the short time they had.
I quite understand why Raymond is keen to come off the diuretics. Potassium is so important. During my C.Difficile saga, I was given chewable potassium tablets every few hours. They were truly revolting, causing nausea and vomiting. When I left hospital, one of the nurses told me that patients often refused to take them and were given potassium intravenously instead. Are Raymond's diuretics intended to help with his oedema?
I may have to join your brother in N. Ireland. My hair looks like a bird's nest and from what I hear, waiting lists at salons everywhere are likely to be months long.
Having created your beautiful garden, I hope you and Raymond will find time just to sit and enjoy it.
Take care,
Love,
Gill xxx
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Hello Gill,
Thank you so much for your very interesting post.
I am so glad that you enjoyed the photographs.
We do need to put photographs that make us feel good on the thread during these difficult times. We need to do all we can to keep our spirits up while we deal with this virus and all this social distancing. It is wearing.
Thank you for giving me the names of the mauve spreading flower. That common name fleabane is intriguing. Has it got anything to do with fleas? Thank you for giving me the proper name. I have now found these names and discovered that it is called Mexican fleabane. From your description it is no wonder it thrives in Exmouth. I have seen it in many places and thought it must be wild.
I was interested to know that goats are used in Cromer to keep the grass weeds short on the sea wall, but that they will not eat the erigeron. I have been to Cromer a few times and really liked it.
I do hope we might in future get some posts about the different types of breast cancer that have triple negative receptor status.
Through all the years that I have now been on this thread, I really only remember you, and one other woman that had metaplastic breast cancer. I also remember some people getting mixed up with metaplastic and metastatic breast cancer. I think it would be interesting to know from newer patients what they have to say about how they are being treated and what drugs they are being given. New names of drugs appear but I am not sure how widely they are used. The old drugs, doxorubicin (Adriamycin) and epirubicin (Ellence) still seem to be very widely used, along with cyclophosphamide (Cytoxan) and then the two taxane drugs, docetaxel (Taxotere) and paclitaxel (Taxol). I think we all have different experiences with these drugs. I found the combination of the first three I mentioned fairly easy-going, even though doxorubicin and epirubicin were being called the Red Devil. The docetaxel that I had for the second three months of treatment did give me a bitter taste in my mouth. My long-term side effect after treatment had finished were neuropathy in the feet and a mild oedema in the surgery arm. My oncologist said that the taxane drug had caused the neuropathy and I later learned from a book Let's talk lymphoedema that the taxane drug also causes lymphoedema.
I think that the oncologists were eager to find something to give TNBC patients post-standard treatment and I do wonder if there is anything now that is really automatic. The drug carboplatin seems to be a popular addition to standard treatment and Xeloda is another drug name that keeps popping up.
As for Raymond, his oedema is not too bad and I do not think he will take any more diuretics as they make his blood pressure plummet. Doctors seem to assume that if you have to have a coronary bypass operation you must have really high blood pressure and so if you need diuretics post surgery for oedema they will also 'help' your blood pressure and this is not the case for Raymond. I have been making sure that he gets plenty of potassium-rich food. I certainly do not like the sound of the potassium tablets.
The good news, Gill, is that you will soon be able to get a haircut. I would think the salons are going to be really busy.
That is all for today.
Love.
Sylvia xxxx
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Hi all, I remember I had not even started chemotherapy when I posted here and now it's almost one year.
I finished my chemotherapy and radiotherapy September last year, and had one a full check up for the on year anniversary of surgery in May.
CT scan shows alright, except 3 tiny benign liver cysts and thin-walled left ovarian cyst which appears benign. Doctor said the ovarian cyst could be the result of hormonal changes since my menstruation has not come back since chemotherapy.
What worries me is the ultrasound and mammogram report.
Ultrasound: Left breast seroma with septations. The soft tissue nodule at the lateral aspect of the seroma may be adjacent breast tissue. Suggest follow-up. BIRADS III.
Mammogram:Cluster of coarse calcification at left mid inner quadrant, adjacent to the surgical site. Suggest follow-up. BIRADS III.
I do feel lumpy about 3cm on top of the surgical line, which doctor told me is scar tissue and not to worry. However, it is hard not to worry, especially with triple negative which has higher recurrence rate.
How to differentiate between scar tissue and a real lump? I'm considering of seeing the doctor (breast surgeon) again but thought maybe I should ask some opinions here first.
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Hello cocolala,
I do remember that you posted sometime ago, but I recognised the name immediately. It is good to know that you have successfully completed your standard breast cancer journey of surgery, chemotherapy and radiotherapy. Congratulations. I do hope you are feeling well.
It could be that your menstruation will come back at some point. It does take the body quite a while to get back to normal functioning.
I have read with interest what you said about your ultrasound and mammogram report and the fact that you are worried about it. It seems to me that what your specialists are saying is that they are not sure what is going on, but according to what I understand by Birads 3 is that they do not think it is a problem. Birads appears to be a kind of chart that radiologists use for their own assessments. You need to ask the specialist for a simple explanation of what they intend to do in order to give you peace of mind. On this forum we are not medical experts and are not supposed to give advice. You need to sort this out with your specialist.
Surely, a breast cancer specialist knows the difference between scar tissue and a real lump. It seems a good idea to talk to your breast surgeon again and your oncologist.
I noticed with interest that your chemotherapy was carboplatin (Paraplatin) and docetaxel (Taxotere). How did you get on with this combination and is this standard chemotherapy combination where you are?
Do not be afraid to ask for a second opinion.
Thinking of you and sending best wishes.
Love.
Sylvia xxxx
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Hi Sylvia,
Thanks for replying
It was hard, during the treatment. When all treatments are done, I felt like it's a dream. Everything happened so quickly, and in a short period of time I experienced so many 'first time'. When I looked back on new year eve, I was so grateful for everything. But now that I have this new worry, I doubt that I could go through the same journey again.
My oncologist did not explain much on the drugs used. I did ask him and he said this is the most suitable ones for me.
My friend, another breast cancer survivor, she too suggested me to seek for second opinion on the lump/ scar tissue. The idea of seeking second opinion from another breast surgeon frightens me. Perhaps I will talk to my breast surgeon first and see how sure she is that it is a scar tissue.
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Hello Sylvia,
Thank you for your post, I'll reply after the weekend. So much to do at the moment and with this hot humid weather I'm finding it difficult to get on with the paperwork that's piling up.
I'm was horrified to see pictures of the 'brawl' on Exmouth beach and the litter left behind on beaches in the South of England. Boris Johnson advised people to take their holidays in Hunstanton and recommended the stunning Norfolk coastline. Hunstanton suffered complete gridlock very shortly afterwards. I do wish that he'd think before speaking.
Enjoy your weekend.
Love,
Gill xxx
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Hello Cocolala,
It was good to hear from you again and see that you'd got through your treatment.
I can't offer any useful advice. Seeking a second opinion if you are still worried after you've had another word with your usual specialist would be a good idea. I did this and was very glad that I did. One thing I would say, it's better to find a specialist in another hospital rather than another consultant at the hospital where you received treatment. You deserve to have peace of mind, which is something you don't have at the present time.
Come back and tell us what happens.
Keep well.
Love,
Gill xxx
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Hello cocolala,
Thank you for your post. I also think that there is no harm in seeking a second opinion and you should not be frightened to do this. You have every right to do whatever you think will help you and give you peace of mind. It is your body and not the medical team's body. My understanding from my own breast cancer journey is that those looking after you act as a team, have regular meetings and try to do what they think will be best for the patient.
You can talk to your breast cancer surgeon again, but if you have doubts about what you have been told, if that were me I would be getting a second opinion.
I think that your oncologist should have explained to you the side effects etc. of your chemotherapy drugs. I think that patients have to be in control of what is being done to them.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello Gill,
I do hope you have managed to have a good weekend and that you have had a bit of leisure time. Today in Exmouth the weather has turned cool and we are getting a little drop of rain. I hope this will keep people away from the seafront. I just do not know what is going on in this country with people so out of control and so antisocial. There is no excuse for piles of litter left on our beaches and people using the beach as toilets, but I also think that the public toilets should not have been locked up. I was horrified to read in the Guardian a couple of weeks ago that councils were not legally bound to provide toilets!
I have been taking it easy, or trying to, for a couple of days after having a tooth removed in an emergency appointment. The way dental surgeries have had to set themselves up because of the coronavirus is not very relaxing for the staff or patient.
I do wish Mary would get in touch as I am getting concerned about her again.
Take care.
Love.
Sylvia xxxx
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Hi Sylvia and Gill,
Thank you so much for your opinions. I have made an appointment with my breast surgeon on 13 July. She's fully booked and only available after two weeks time and I will try not to think about this for the time being. I'll come and update after the appointment. Like what both of you suggested, I have decided in case I am not satisfied with what the consultant told me, I will seek a second opinion at another hospital.
Thanks for giving me strength...
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Hello cocolala,
Thank you for your latest post. I do hope the two weeks will go quickly for you as waiting is very difficult. Try to keep busy and do things that you enjoy.
Please remember to come back after the appointment and let us know how you got on. I was glad to know that if you are not satisfied you will get a second opinion.
Take care.
Love and best wishes.
Sylvia xxxx
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Hello everyone,
I was looking at some of the posters from the past and wondering what has happened to them. These are some of the names that I remember, so Hello to:
viewfinder,
LoveAndLight88,
Honeytagh,
linali,
sam52,
gmmiph,
NisaVilla.
We are always happy to hear from anyone that has been on the thread and to have their news.
Greeting to everyone.
Sylvia xxxx
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Hello Sylvia, I enjoy reading this thread. I was diagnosed July 3rd, 2019 with triple negative breast cancer. I live in the USA, in Kentucky, in part of the Appalachian mountains. I have my 1 year dxs anniversary this week. My husband passed away in June of 2017 from a gastrostroma tumor, gist, for short, it was huge by the time it was found on his small intestine. I have 2 son's and 7 grandkids, I am 55 years old and unemployed at the moment , I don't know if I will go to back to work, i worked in a drs office, he retired and then husbands dxs so I took care of him and now myself. This was the first thread I read when I joined BCO and it help me immensely. My treatment was ACT with no radiation. I did well with this treatment and suffered only minor side effects. I have had 2 checks this year, one from the oncologist and one from the surgeon, all regular appointments are behind because of the covod19, but I hope to have them completed by end of August.Thank you all for this thread.
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Hello Gamb,
Thank you for your post and it was nice to hear from you. I am glad that you enjoy reading this thread.
Thank you for giving us some details about your treatment and what has been going on in the past year since your diagnosis.
Congratulations on being about to celebrate your first anniversary since diagnosis.
Reading your post I was thinking what a difficult time you have been having in your life. I was so sorry to read that your husband died in June 2017 from a gastrostroma tumour. That must have been a terrible time for you. It must have been very difficult for you about two years later to have been diagnosed with breast cancer and to face that journey without your husband. I do hope you got plenty of support from your sons, family and friends.
I do hope that you are doing alright while you are unemployed and give yourself time to think about what you want to do. Work does give us some motivation and a reason for facing the day. You probably have a busy time with your seven grandchildren.
It must have been interesting working in a doctor's office and I can understand all that you have been through since then, what with your doctor retiring, your husband being ill and your taking care of him and then being diagnosed with breast cancer and having to get yourself through this. You may find going back to work beneficial.
Thank you for your very kind words about the thread. It makes everything worthwhile if we can help people and get them through their cancer journey and the ups and downs of everyday life. I think we all learn to live the day and take pleasure in the little things in life.
I was glad to know that you did well on your chemotherapy and that you have suffered only minor effects and that you did not need radiation. I was glad to know that you have had check ups as well.
The Covid-19 pandemic has affected everyone in so many ways and we just have to hope that we shall gradually get back to a more normal life and I do hope that you will be able to complete your appointments by the end of August.
I do hope that our friend Mary from the US will feel well enough and refreshed enough to post again soon. I am sure the two of you will be able to share a lot. I do not know if you remember her details, but she also looked after a sick husband who died and she was diagnosed with TNBC.
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Our weather has become cooler here in Norfolk too. Not much rain though. Last week was far too hot for me, so a break from all that sunshine has been very welcome.
I certainly don't envy you your trip to the dentist last week. Hope you've recovered, though it's always a bit depressing when we lose a tooth. I read that until coronavirus is under control, which could be many months from now, dentists will no longer risk using drills. So no more fillings and those teeth which begin to develop a tiny spot of decay will have to be left to decay further. I find this worrying, especially when so many serious conditions stem from poor oral health.
Fleabane appears to have an early, possibly medieval, connection with fleas insofar as it could have been dried or burnt in order to ward off fleas. However, Culpepper asserts that it was given its name because fleabane seeds are small and black, just like fleas. I wish I could find the time to read more about Culpepper. He seems to have been a bit of a character, very anti-establishment, anti-authority and anti the Royal College of Physicians. He believed that physicians deliberately kept medical information away from mere mortals in order to elevate there own position. Culpepper despised them for their haughty, superior attitude. Some of today's Physicians might benefit from a dose of Culpepper!
I do agree that we could learn from patients with other types of triple negative breast cancer. I'd be interested to know more about different experiences. Another thread on metaplastic breast cancer is now available on the site. There are very few contributions, though this is to be expected as very few women have this subtype. The links to metaplastic research have been useful. I was advised by an oncologist from The London Cancer Centre and also my surgeon, that radiotherapy wasn't considered necessary following mastectomy and chemotherapy, but according to the latest research on metaplastic breast cancer, radiotherapy extends overall survival rates. Larger studies are needed though and as my cancer was on the left side, I'm not sure how much radiation so close to the heart is safe.
I do remember someone with metaplastic breast cancer posting here on the thread. I discovered her when I went back to read the earlier posts from some years back. I seem to recall that she came from the North of England and was in despair about the lack of care and support from her hospital. This poor lady was getting more and more desperate for help and then one day her posts just stopped.
I see that Leicester, my home city, is now back in lockdown. My daughter's surgery is in Leicestershire, so it's unlikely to be fully functioning by July 4th as previously planned. She finds telephone consultations difficult and has so many to get through. It's no substitute for being face to face with patients. I'm expecting more Covid infections throughout England after the appalling disregard for social distancing on our beaches. Why don't these selfish people ever stop to consider the local community?
I expect that our friend Mary has her hands full with puppy training. It would be a relief to hear from her though.
It's just coming up to half-past midnight so I must leave it there.
Wishing you both a relaxing week, free from marauding holidaymakers.
Love,
Gill xxx
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Hello Gamb,
It's good to hear from you and learn something of your story. You've had such a difficult time, but here you are, almost a year from diagnosis, congratulations! It must have been a considerable blow, losing a beloved husband and then to be diagnosed with cancer yourself just two years later. I hope you're being kind to yourself.
The thread is very friendly and full of useful information.
Keep moving forward and stay well.
Gill xxx
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Hello Gill,
Thank you for your latest post. It is cool this morning in Exmouth and I really prefer it like this.
I am fine now after my visit to the dentist but it is rather strange going to places like this with the Covid-19 rules and regulations in full force. It seems that they will only be doing extractions because they cannot use equipment that creates aerosols. I got a detailed bill for my visit and discovered that part of it was for a Covid charge. It is to cover all the cleaning etc. It is worrying that dentists cannot work properly as I agree that serious conditions can stem from poor oral health.
Your explanation of fleabane was interesting and so were your details about Culpepper. I think I would have been good friends with him. I do believe that doctors should be more open and down to earth with their patients. I am certainly not afraid for standing up for myself in front of them. I get the impression that perhaps a lot of patients do not want to know about what is happening to them and especially do not seem to be inquisitive about the pills they are being given. I take no pills and Raymond is not happy about taking the pills he has been given since January 25th when he was in A&E and then spent four weeks in hospital. The doctors seem to think that one size fits all when it comes to pills and even treatment. Most patients must have high blood pressure because there was so much emphasis on lowering it, even though Raymond kept repeating and I kept repeating that Raymond does not have and never has had high blood pressure. They nevertheless gave him pills for it and his blood pressure would plummet dangerously low. I think they are also guilty of ageism and attribute what they see as part and parcel of ageing to everyone over a certain age.
I do not know where patients are heading with telephone appointmnts. I think they are a waste of time.
I do hope we shall get some posts from people with different kinds of breast cancer but with triple negative receptors. It is interesting to know what chemotherapy drugs they are being given in particular. I do hope there will come a day when chemotherapy and radiotherapy can be avoided as they are so damaging.
I am sure there are going to be other parts of the country going back into lock-down, especially the big cities. I dread what is going to happen in Exmouth when the Sandy Bay holiday resort opens soon.
I did PM our friend Mary so I do know that she is alright but seems very tired. The little puppy has been keeping her very busy as well.
That is about all for now. Take care and enjoy each day as much as you can.
Have you been watching Talking Heads on BBC1? They are absolutely brilliant monologues.
Love and best wishes to you and Michael.
Sylvia xxxx
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Hello adagio and 53nancy,
I am just popping in to say that I am thinking of you, adagio in Vancouver, British Columbia, and Nancy in Manitoba (I cannot remember where you are in Manitoba). I want to wish you a very happy Canada Day and hope you are able to have some enjoyment and relaxation.
I do hope you and your husbands are well.
Love.
Sylvia xxxx
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Hello Gill and everyone,
Yesterday I was reading some articles in the London Review of Books when I came across a page with new books on it and I was interested to find one about cancer. The title of the book is Malignant - How Bad Policy and Bad Evidence Harm People With Cancer, by Vinayak K. Prasad, MD, MPH.
"How hype, money, and bias can mislead the public into thinking that many worthless or unproven treatments are effective". Price is £24.50 hc/ebook.
This seems expensive but I get the feeling it is a major book.
It reminds me of the book that certainly I read and so did Mary some years ago entitled The Emperor of all Maladies. by Siddhartha Mukherjee, a biography of cancer.
Best wishes
Sylvia xxxx
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Hello everyone,
It is Friday again and I hope you will all have a good weekend. To our American friends, Happy July 4th. Do not let Covid-19 spoil it for you.
I cannot believe how quiet the whole of the TNBC forum has been this week. We do need to keep it at the front of the Active Topics.
Best wishes
Sylvia xxxx
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