Calling all triple negative breast cancer patients in the UK
Comments
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Hello PeterandLiz,
I was so happy to read your post and to know that Liz is now 5 years out. How time flies!
I agree with you about the pain that is left in our bones after chemotherapy. I hear it from so many people.It is the price we have paid to stay alive. We all know the drugs are toxic and radiotherapy does not do us any good either.
I am glad that you are doing some travelling and getting the best that you out of life.
How is your son doing?
Pop in when you can. Michael still pops in and recently Tom popped to say his wife was doing well . You three men have made such an impression over the years.
Fond thoughts,
Sylvia.
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Hello 4everstrong,
It was nice to hear from you and to know that you are getting on with your life. I can almost feel your positive vibes.
I do hope all goes well on Friday when you go for your first post treatment check up. Be sure to let us know how you get on.
Fond thoughts,
Sylvia xxxx.
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Hello to everyone,
Another week is nearly over and I just wanted to wish you a good, positive and happy weekend.
Mary, thank you for all the help and support you give on this thread.
Hanieh, I hope all is well with you and that your days are happy ones.
Adagio, I am wondering where you are at the moment and hoping you are having a great time. all make
Amanda, Please pop in and let us know that all is well. There is much doom and gloom in our country.
Michael, We are missing you on the thread.W e hope to hear from you soon.
You all make up a special group of post treatment people and those going through treatment need you support.
Best wishes,Sylvia.
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Hello Chris, Claudia, Kath, Pam, Rhond,
I just wanted to tell you we are thinking of you as you go through your chemotherapy treatment. Keep in touch and let us know how we can help. You will get through this.
Best wishes,
Sylvia.xxxx
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Hello 4everstrong,
I hope all has gone well today.
Valstin52,
I hope all is well with you.
Best wishes,
Sylvia,xxx
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Hi all
I am unfortunately not bearer of good news. 3 nodes found in my liver. Next week decision on protocol. Thanks 4 ur support to all.
I will keep positive and strong until the end.
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Maryna - so very sorry to hear about your little cat. I lost my dog last year to internal bleeding and I still feel the acute pain of his loss. It seems like our hearts are torn from us when we lose our pets because they are so much part of us and are always there for us. Praying for comfort for you during the grieving process.
Looking forward to hearing about the seminars.
Sylvia - I am now in Perth, Western Australia - I am told it is generally quite warm at this tim of the year, but for us it has been cool and very windy. We went a bit north yesterday to the Pinnacles desert - if you can, google them and see what they look like - it is like stepping into another planet - absolutely amazing. Exmouth is even further north of Cervantes which is the tin we stopped in!!
I do not read very often because we have been quite busy. We are off to Adelaide in 2 days time. Time is going by quickly. Australia is a vast country - the west is quite wild and has very interesting trees and flowers. We have seen many kangaroo, snakes, lizards, wild rabbits, emus and countless colourful birds.
Wishing only the best for those going through treatments - it is a long haul, and certainly an exhausting one - I think your counsel of one day at a time is excellent. I am grateful each and every day that I got through the treatments!!
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Hi Sylvia,
Doing much better!Went out to eat twice and just went
For a very long walk with a friend.My appetite is back
But I am waking at night with the sound of my heart beating and it's kind of scary.I am feeling stronger and
Am a little worried about the hair loss -well maybe
More than a little.I know I have to take charge and cut it
Before it happens.I love the Vita magazine,thanks for suggesting it.
Rhonda
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Hello 4everStrong,
I was so sorry to read that three nodes have been found in your liver and this must be very disappointing and worrying for you. I do hope your appointment to decide what to do will be early next week, so that you are not left waiting. Remember there is always treatment. Do you think you might be given some chemotherapy treatment with a taxane such as docetaxel (Taxotere) or paclitaxel (Taxol)? When I first looked at your details I was puzzled about why you had not had one of these as part of your neoadjuvant chemotherapy treatment, as this is often the case. Like you, I had Cytoxan (cyclophosphamide) and Ellence (epirubicin) for the first three months and then Taxotere for the next three months. Most people seem to have a taxane.
Please let us know what happens next week. There are drugs to treat nodules that have spread to the liver.
Keep positive and strong.
Sending you fond thoughts.
Sylvia xxxx
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Hello Rhonda,
I was glad to read that you are doing much better and that you have been out to eat and gone for a long walk with a friend. I am sure that all of that will have done you a lot of good.
With chemotherapy every three weeks, this seems to be the common routine. We go for our treatment, come back home, take the anti-nausea pills etc. for the first few days, feel out of condition for that first week and then start to pick up. By the time we are due to return for the next treatment, we are feeling quite normal and then we have to start the whole procedure over again.
I think it is quite normal to have sleepless nights. The steroids seem to affect a lot of women and make them feel over-active. I remember when I was first diagnosed and started the chemotherapy, I used to wake in the night with thoughts of cancer filling my mind. You will find this will pass. You could try having a cup of chamomile tea before going to bed. It does seem to make you sleep better.
Try not to worry about the hair loss. I did not cut mine at all and just let it fall out naturally. It fell out pretty quickly after the first chemotherapy treatment and I needed to wear my wig when I went for the second chemotherapy treatment. You might find that with hair gone your scalp tends to get very dry. I used to wash my scalp in baby shampoo and then rubbed avocado oil into it and then give it a little rinse.
I was so glad to know that you like Vita magazine. It is an excellent magazine to read, is easy to understand and written by patients who know what they are experiencing or have experienced.
Make sure you continue to keep well hydrated and eat nourishing food.
Sending you fond thoughts.
Sylvia xxxx
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Hello adagio,
It was so lovely to hear from you. I have posted a map of Australia so that we can better follow your travels. As you can see, Exmouth is quite boldly printed on the map. I have to look up the Pinnacles Desert. It sounds amazing since you described it as feeling like stepping onto another planet. I shall also look up about Cervantes. Do you think there is any connection with the great writer of the same name?
I do hope you can post some more as I think educating ourselves about other countries is very important and it is good therapy on the thread for taking our minds off cancer.
At least you are used to a big country coming from Canada. Coming to Canada from the UK was quite overwhelming for me, as the UK is such a small country compared to these wide, open countries.
If you can post some photographs of trees, animals and flowers, that would be very exciting.
Take care and enjoy every moment of your trip.
A friend of mine flew off yesterday to Canada. She is going to Niagara and then on to Winnipeg and from there to the northern wilds of Manitoba to go on polar bear seeking expeditions!
Wishing you all the very best.
Sylvia xxxx
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Hello Kath,
Now that I have posted a map of Australia, perhaps you could tell us exactly where you are. You said you had been in Melbourne, so I assume you must be in Victoria. Tell us a bit about your life there.
I hope to post a map of the world soon so that I can join up where we all are.
Keep looking forward.
Fond thoughts.
Sylvia xxxx
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Pinnacles Dessert, Western Australia
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Hello adagio,
I have just looked up Pinnacles Dessert WA and am truly amazed. There are lots of photographs on the internet. I can see what you mean about stepping onto another planet. I wonder how all those stones got there?
That is all for now.
Sylvia xxxx
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Here we are in Brisbane - this was back in September - it was our very first city in Australia
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hi sylvia,
Just browsing thru your thread. I've picked up some helpful info from the posts here to help me understand tnbc better. Thanks for this.
I'll try to always browse thru your thread and keep you informed of any development on my case.
Wish you well and take care.
Gmmiph
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hi Slyvia
I live in a mining city called Broken Hill which is in NSW 40 km from the South Australian border. Very famous for silver lead and zinc mining. Feeling better physically today but still work on my anxiety. Went shopping for Christmas presents today to keep my mind off things which seem to have worked well
Cheers
Kat
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Hi Sylvia, Mary and all
Mary, how sad it is to hear you lost your pet. I hope you are feeling better by now. This sense of loss is really bothering but it gets better as time goes on.
Sylvia, for the last few days, I again that feeling of pressure and pain in my head sometimes accompanied by a dizziness, but no other symptoms. I have visited a Gp and she ordered blood test to check everything. There is the possibility of sinusitis, too. I hope I soon get to the bottom of it as it's really bothering.
adagio, what a nice picture of you and your husband. Wish you the best memories in Australia.
4everstrong, sorry to hear your news. I pray everything gets better soon.
Love
Hanieh
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Hello adagio,
Thank you for the photograph. You and your husband look very happy. You are certainly getting around.
Best wishes.
Sylvia xxxx
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Hello Gmmiph,
Welcome to this thread. I think you will find it useful to come here, because we have several women going through chemotherapy, so you will have company. I have just posted on your thread but I am going to post that post here also, so that others here can join in and help you.
"Hello gmmiph,
I have been reading the other posts since I posted to you. I do hope you are not going to get confused with too much information.
You are the only one that can make up your mind about your treatment. Focus on the fact that with TNBC receptor status more of us do survive than do not.
You have already started your orthodox treatment by having surgery and you have got through that. You need to make up your mind about chemotherapy and then once this treatment begins you will settle into a routine that will keep you busy and you will end up hopefully with NED. This means there is no visual evidence of disease. You will then go on to have radiotherapy to mop up any cells that may have escaped. After that with TNBC you will have regular check ups to keep an eye on what is going on.
Delaying treatment may make things worse, because you will not know what is going on inside your body. I did delay my treatment and took other things while doing so, but I would not advise that to other people.
I do understand how you were full of fear, and of course we are all afraid when we get a diagnosis of cancer. You can get through chemotherapy, with its ups and downs, like the rest of us have. When I started chemotherapy I had to give my height and weight because the chemotherapy dose is based on that. I took the steroids given to take home with me for the three days prescribed and I had no nausea or sickness, just tiredness. My weight did not budge during my six months of chemotherapy. It was still the same as before treatment. You can do this.
As for nutrition, we all have to make up our own minds. I eat healthily, lots of fruit and vegetables, organic if I can. I emphasise berries such as blueberries, and blackberries. With vegetables I emphasise members of the cabbage family, broccoli, Brussels sprouts, greens, kale etc. and do not overdo root vegetables.
I do not eat any meat or dairy products. I eat wild oily fish and some cold water prawns. I have unsweetened almond drink, organic soy yoghurt and eat sauerkraut for a healthy gut. I also have nuts and seeds. From the beginning of my cancer treatment I have followed the Mediterranean diet and followed Chris Woollams of Cancer Active. You can sign up to his free email.
During all of my treatment I also saw a homoeopathic consultant and took oral Iscador. I did this on the recommendation of my breast cancer consultant surgeon and the homoeopathic doctor worked with her.
I hope this helps. Keep things simple in your mind. You do not need loads of information. Concentrate on one thing at a time. During chemotherapy keep hydrated, rest as you need and keep looking forward.
Be positive about your receptor negative status. After treatment keep your immune system strong and it will get you through."
Wishing you all the very best.
Sylvia xxxx
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Hello Kath,
Thank you for your post and for letting us know where exactly you are in Australia. I think it is so good to have this educational aspect of the thread. It is useful to have information about other parts of the world. Have you done a lot of travelling in Australia? It looks like a fascinating country. Where do your family roots come from? Australia and New Zealand are very popular travel places with people from the UK. So many families have children over there.
I was glad to know that you are feeling better physically. Keep up the good work as I believe that physical health and mental health are closely connected. You need to eat as healthily as you can to get through to the end of this chemotherapy journey.
Thinking of you.
Best wishes.
Sylvia xxxx
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Hello Hanieh,
Thank you for your post.
I was sorry to read that you are once again experiencing that feeling of pressure and pain in your head and that it is sometimes accompanied by dizziness. This could be all sorts of things, so you did the right thing by going to see a GP. So many things can be discovered through a blood test so that was probably the best thing for your GP to do. How long will you have to wait to get the results? I hope it will not be long as I know you will be worrying. It could be sinus, which makes a person feel miserable. It could be stress related. You are busy with your work and with your family. Let us know how everything goes.
How is work going? Do you have any more breaks ot any more holidays planned?
Here in England there is a real sense of the end of summer. The days are much shorter and it is dark by 7pm. We put the clocks back at the end of October so it will be dark even earlier. The trees are rapidly shedding their leaves, so it is an untidy time of year as far as I am concerned! It does not get light until 7am.
We have at last had some well needed rain, so the grounds here look much better.
The shops are already stocking up for Christmas and people are looking for Christmas presents.
Thinking of you and sending best wishes.
Love.
Sylvia xxxx
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Hello everyone,
I do hope you have managed to have a good Saturday.
I am trying to finish off the information that I thought you might find useful from the free magazine Vita.
An article I found interesting was entitled "10 tips to boost self-esteem" - Many people struggle with their self-esteem after a diagnosis of breast cancer. Isabelle Cullis suggests some simple ways to help you feel better about yourself (Isabelle has worked as a psychology practitioner in the NHS and now helps to co-ordinate Breast Cancer Care's moving forward service). These are the ten ways she suggests to improve self-esteem.
1. Celebrate the small things.
2. Set yourself a challenge.
3. Be more mindful.
4. Be compassionate to yourself.
5. Seek out supportive people.
6. Do not compare yourself to others (or yourself before cancer).
7. Make time for yourself.
8. Set realistic expectations.
9. Look after yourself.
10. Get support if you need it.
In the magazine under each heading there is a short paragraph with more details, for example,
1. Celebrate the small things.
Focussing on positives can help us improve our mood and break negative thinking habits. Try noting down some positive things at the end of each day. Think about things that have happened, something you may have done or a compliment you received.
I hope you will have a think about these things and try to put them into practice. If you cannot subscribe to the magazine try looking on line – www.vita.org.uk.
I may try to post these tips gradually over the coming days. I would be interested to know what you think. We need to keep our self-esteem as high as we can, because "someone with low self-esteem tends to have a negative opinion of themselves and finds it difficult to recognise anything positive they have done or nice qualities they have".
In the article it talks about how the physical effects of treatment such as pain, fatigue and not being able to sleep, may mean you cannot carry on as you did before diagnosis. You have to try to adjust, as these things may last for a long time after treatment.
There will be changes in your body image because of what the treatment involves, surgery, hair-loss, lymphoedema, weight changes etc. You may also feel less confident, less motivated, in low spirits and anxious. I think we shall all recognise these things.
Read the ten tips and try to work on them.
I hope you will all come forward to support Gmmiph who has just posted on our thread.
Best wishes to everyone.
Sylvia xxxx
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I am posting a map of the world so that we can all imagine one another in various parts of the world. I am always amazed at how small the UK is compared to all the large land masses. If you want to post a more detailed map of your own particular country and where you are in it, that would be a good idea. This map shows us the US where we can think of the many fine ladies on the threads, such as Mary, as well as Canada (adagio), France, and Iran, where Hanieh lives.
Best wishes.
Sylvia
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thanks Slyvia
Still not great mentally and wishing they had done more scans pre chemo just to make sure but my lesion was small caught early and no lymph involvement with clear MRI and ct of chest and abdo and so I need to focus on the positives and not the what ifs
Cheers
Kath
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Hello Everyone,
I'm just popping in quickly to check in and say hello. I had my second to last AC chemo treatment this week, and I'm feeling well enough to get out and about a little today, which is wonderful. For some reason, the nausea hasn't hit quite as hard, though the fatigue has. I've been doing some cooking with one of those chef's delivery services - basically gourmet cooking experiences for the home bound. We had a spectacular salmon dish with a potato/turnip/apple/brussels sprouts hash. I sat on a chair with a cutting board on the table in front of me to do the prep work. I love to cook, and it makes me feel better to be able to do things like this.
I read Joan Lunden's, "Had I Known" memoir while I was recuperating this week. She was the host of a daytime TV show here for decades. I can't recommend it as a great book at all, but I was pleasantly surprised to discover that she is a triple negative survivor, and there was quite a bit of interest to read about her treatments and doctors' opinions.
I met with my general surgeon this week. She thinks I may have a PCR to the chemo. And of course, we'll see when we get the pathology from the surgery. She mentioned that I may not need radiation, which baffles me a little. As much as I would love to skip it, I can't imagine not doing everything possible now to avoid a local recurrence later. I'll talk to my oncologist about it this week. I'm also looking into possibly getting a DIEP flap surgery, but very daunted by the recover time for that.
I am very cheered to see the world maps and to be reminded of our connections. I hope everyone has a relatively positive week.
- Pam
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Hello Pam,
It was so nice to read your post and to know that you seem to be doing well. It is good that you feel well enough to get out and about. The more normal your life during the long months of chemotherapy treatment the better. I think if you are getting quite smoothly through chemotherapy, as you seem to be doing, and as I did, it is the fatigue that is the hardest. All you can do is rest.
The meal you prepared sounds very healthy and with a good mixture of ingredients.
Thank you for mentioning the Joan Lunden's book. It is good to focus on the fact that more people with TNBC survive than do not. It makes me so angry that the medical establishment and the media are still talking TNBC down. I am so glad that I have not had to take anything since finishing standard treatment and that my body has been able to fight its own corner. I do not think it is right, either, to make hormonal breast cancer sound so much easier. I cannot imagine what it must be like to be on tamoxifen from 5 to 10 years or a mixture of that and drugs like Arimidex. These drugs give you weight problems and bone problems and goodness knows what else with their nasty side effects. The women that I know locally with spread have been all hormonal. I think it is problematic especially if you are HER2 positive. There are drugs but they do not necessarily work and all seem to be toxic. I have never taken any notice of the doom and gloom surrounding TNBC.
I do hope you will get nothing but good news from this treatment. As you say, you need to wait until you get the pathology report from your surgery.
If I were you, I would question your oncologist on why she thinks you do not need radiotherapy treatment. I thought surgery, chemotherapy and radiotherapy were always pretty standard with TNBC receptors, but things are always changing. If you do not have it and there are problems later, you may regret it.
As far as reconstruction is concerned, I did not want to go that route at all. I know my breast cancer surgeon told me that a mastectomy was not considered major surgery, unlike hip replacement and hysterectomy and that my mastectomy surgery would take about 45 minutes, but that reconstruction turned it into a much longer surgery. You are just a young woman, so I can understand why you would want it. It is something you need to discuss carefully with your medical team, but my own personal feeling is that, if it were me, I would want everything to settle down before stirring anything else up in my body.
I was wondering whether, given your young age, you were offered genetic testing for BRCA1 or 2. It is good, for the thread, to keep up with what is being offered as the years go by.
I was so glad to read that you appreciated the maps that I posted. I thought it was good therapy and educational. Our politicians cause so much trouble in the world that it is good to realise that we are all on this planet together and we should all try to get on.
I do not know if you have read all the posts lately, so you may have missed the information I gave about Vita magazine, which is free and available on line. This is mostly about breast cancer patients relating their experiences. There is mention of a book reviewed by Breast Cancer Care's clinical nurse specialist. One that I think would be most interesting is entitled The street-wise patient's guide to surviving cancer by Karol Sikora. It says on the cover An absolute must-read, as stated by leading oncologist Professor Pat Price.
Karol Sikora is a very well known and experienced oncologist. I remember writing to him some years ago and I received a very friendly and chatty reply.
Keep up the good work and keep in touch as much as you can.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
It was nice to hear from you, but I was sorry to read that mentally you are not feeling great. I was wondering what support you are getting locally, if any. Is there any kind of support offered near where you live? What kind of charities do you have? It is good if you can be referred to at least one, where you can go and have someone to talk to. When I was first diagnosed I used to go to FORCE charity which was in a lovely house in the grounds of the RD&E Hospital in Exeter, about 12 miles from Exmouth. I would go there with Raymond just to have a cup of tea and a chat with the volunteers. It was so good to be away from a hospital setting. If you wanted it, there were all kinds of complementary therapies carried out by properly qualified people. You could also have one to one counselling. I did that on one occasion and found it helpful, especially the advice to put all the problems and fears into a figurative large drawer and take them out one at a time as needed, and forget about the rest. I found that very helpful. One thing for sure is that keeping a load of problems and worries inside your head will not serve any purpose.
I also had Hospiscare nurses who came regularly to my home for a chat over a cup of tea and they could sort out any needs I had. I really appreciated them and still see some of them around now when I am in the town.
I hops you can find some sort of help or. If not, try to make a friendly circle of your own with other breast cancer patients.
I do not quite understand what other scans you wish had been done before your chemotherapy. You had MRI and CT scans so I cannot see what else you would have needed. I had a CT scan and a bone nuclide scan before and after treatment. The bone nuclide scan was done because I had high calcium levels in the blood and it was thought the cancer might have spread. It turned out the high calcium levels were due to something else.
You have had a lumpectomy for a very small tumour, you have no node involvement, so you have every reason to be optimistic. Scans will be more useful after you have finished your chemotherapy and radiotherapy, if you are having it.
You might find it useful to keep reading those 10 tips to boost self-esteem, which you shoulf find on line in more detail at www.vita.org.uk. You might also like to read Karol Sikora's book.
Thinking of you and sending positive vibes your way.
Sylvia xxxx
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