Calling all triple negative breast cancer patients in the UK
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Hello adagio and Mary,
I would like to introduce you to Kathy28A (Kathy), who is posting on behalf of her sister who has been diagnosed with IDC breast cancer with triple negative receptors. She is terrified and Kathy is doing all she can to help her sister through this. We have been there, the three of us and the others on the thread, so we know what the two sisters are going through. I am sure you will post to support Kathy and her sister.
I hope all is well with you, adagio. Are you off on any adventures? Mary, many thanks for all that information about the rotator cuff. This elderly friend is 89 and suffering not only from the fall and the damage, but from the after effects of shingles, constant nerve pain.
Have a wonderful time, Mary, and enjoy every day. I shall try to answer more of your post later today or tomorrow. I think you are leaving on May 4th or 5th.
Sending you both fondest thoughts.
Sylvia xxxx
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Hello,
Sylvia: Thanks so much for your reminder not to overdo things. I may have mentioned before, but my MO told me to "take it easy," and I'm trying to reduce the stress that I put on myself. It's tough, because I'm pretty high-intensity.
I prepped my cilantro/lime chicken, and it turned out beautifully. I made oatmeal "energy balls," (with almond butter, cocoa power, almonds, and a little honey), which were very simple and tasty. I also tried to make roasted garlic hummus in my blender but that was a fail. I'm going to to try it next time with my immersion blender. It would work beautifully with a food processor, but I don't want to buy one.
After a week of dosage, the Glucosamine seems to be making a big difference with my joint pain, It's a little hard to say for sure, though, since it also got quite a bit warmer during that time. I'm grateful either way, because unless you are motionless, you are using your joints.
Mary: Thanks for your kind message. I would say that "battling to get things done with the energy that I have," is the perfect way to describe where I am.
I don't have Scottish roots, but I have always wanted to visit Scotland. I really hope you get a chance to take that invitation for Indian and Pakistani food after you return. And I also hope that you have a wonderful trip.
I got a smile from your description of your red face from the steroid treatment, and I'm wishing you the maximum relief when it has a chance to kick in. My brows are back for the most part, and my lashes come and go. I think they've left me 3 times since the end of chemo. As long as they return again, that's fine. The brows were much more of a pain to recreate.
Kathy: I'm glad to hear that you're reading books to help your sister. Books really helped me know what to expect. The boards here helped me too. Just be careful not to scare yourself with Google.
It's so difficult when there is a diagnosis, but no treatment plan yet. The breathing exercises are a great idea. And she's lucky to have a sister to turn to for support. Don't forget to take care of yourself as well.
Pam
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Thank you so much Sylvia,
Your message has made me think about things a bit differently, going for walks and doing things that lighten her mood a little is something I will try and help her with, thank you. I will make some notes from your post, particularly your advice around hydration and ways to cope with symptoms. We didn't receive a treatment plan today, unfortunately the appointment was with the breast surgeon, who stated that he needs to refer her on to see an oncologist, as he does not deal with chemotherapy. He stated that an urgent referral has a two week window, but we are hoping that we will receive an appointment this week. The staging hasn't been done yet either. We stressed that its been four weeks and that we really need to have a treatment plan in place to get her through this. Our experience today is that the system seems very fragmented, and its very easy to get lost in the system.
Kathy xxx
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Dear Pam,
Thank you for your message, I am not familiar with being on threads, so it takes me some time to figure out where to read and reply to comments - it took me over ten minutes to find this thread after logging in! I'm not great with the internet, but I am slowly learning! Your oatmeal energy balls sounds delicious! I hope these lovely recipes are helping you to increase your energy as you start to build your strength back up. I hope that you are able to get good rest too to help you with recovering xx
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Hi, Kathy,
Welcome to our thread, and sorry you have a need to be here. May I say your sister is a very lucky woman to have a sister like you who is doing so much to help her through this. I'm sure she is so frightened right now, but it does sound like you are both getting educated and doing the right things all down the line. When I was diagnosed, I knew nothing, and just did what the docs told me, for better or worse.
4 weeks does seem lengthy, but it's probably normal. When I found my lump, I called my gyno on a Monday, because I didn't know who else to call and I had just seen her a few weeks before. (No lumps at all at that visit!) She referred me by phone to a cancer center the following Friday, and I spent that week fretting about it but my husband was also very ill and I had to see to him. On Thursday he had an appointment with his hematologist. Light bulb went off, that doc is also an oncologist, so I told him about my lump. He asked if anyone had looked at it, and offered to do so. He was concerned and immediately sent me for a mammogram and then a biopsy the next morning. Then I had to wait through the weekend for Monday, and heard that it was malignant. Then they see-sawed between chemo first, chemo later, and finally settled on a mastectomy about 2-3 weeks later followed by chemo. Long story short, it probably ended up taking about a month between finding the lump and surgery. It is scary because in my case the lump showed up so fast, in my mind it would grow as much again in another month. Did your sister's lump seem to come up quickly?
As far getting lost in the system, you will probably find there are some excellent people that you will be working with. But it is our job to make them remember we are individuals who may not react to things exactly like the 10 other people they just saw. It sounds like you will be by your sis's side all the way, it will be very good for her to have your eyes and ears there to hear and see and remember.
As for other advice, you have picked a great advisor in Sylvia. She is so very knowledgable about proper diet, exercise and many other things and she is always a calm and reassuring voice.
I wish you both the very best, and want you to know that we are here for you. This place has helped me get through some very dark times.
Talk to you again soon, Mary
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Hello Kathy,
Thank you for your post. I was glad to know that my last post was of help and I do hope you and your sister will be able to take some leisurely walks and do enjoyable things. I do believe that laughter and feeling relaxed is very important and therapeutic.
It is a good idea to write things down that you think may help your sister and it is also a good idea to write questions before appointments and to write notes during appointments. It is so easy for important questions and information to slip your mind when you are sitting in front of a consultant. I am assuming that you go into the appointments with your sister. My husband, Raymond, was always with me. We acted as a team.
When I was first diagnosed, which was by my GP, whom I had gone to see because of a large lump that seemed to appear from nowhere, she told me, after examination, that she was sure it was cancerous. At that time there was a two week wait to see a consultant. I first saw a breast cancer consultant surgeon at her clinic. It was an all day thing to prove that I did have cancer. I was very teary at that time and very emotional, but strangely quiet within myself.
It looks as though the waiting time has got worse. Since your sister has a large tumour, and since you had already been told that it was IDC with triple negative receptors, I would have thought that you would have gone to see an oncologist, rather than a breast cancer surgeon. Did he mention anything about surgery? Did he say whether the surgery was going to come first? Did he mention the choice between a mastectomy and a lumpectomy? I would have thought with the large tumour it would be a mastectomy and that chemotherapy treatment would come first.
As soon as I was diagnosed I bought a book, new out in 2005, entitled The Cancer Directory by Dr Rosy Daniel and I read it cover to cover before my next appointment. In fact I wrote out questions and posted them to the breast cancer surgeon, so that she could have the answers ready for me at my next appointment. She did have them and went through all of them with me.
Early on in the posts I wrote about how I delayed my treatment for some months and tried other treatments, but eventually went back to the hospital and started the orthodox treatment, having taken advice to do this. You can read about this in the early pages of this thread, which I started nearly seven years ago. I do not advise anyone to delay.
If I were you I would push to get an earlier appointment with an oncologist and to get your treatment plan sorted out.
I know that you are in the UK and am wondering at which hospital your sister is having her treatment? I had mine at the Royal Devon and Exeter where the consultants seemed to act as a team and got together to consult on what was going on. I had excellent treatment and had a woman breast cancer consultant surgeon and a woman oncologist. Patients were given a special cancer nurse, with a phone number, whom they could consult whenever they needed. I do hope the system is still the same and is in force at the hospital where your sister is a patient. I feel that everything being efficient and in order is very important for frightened and stressed cancer patients.
It is hard to believe that under our present NHS an urgent referral is two weeks. This means you will have been waiting six weeks.
Are you going to wait out the two weeks?
If your sister has chemotherapy first, she might find it easier to have weekly infusions rather than every three weeks. She will probably have a chemotherapy combination, something like I had, which was epirubicin, cyclophosphamide, (three months) and then docetaxel (Taxotere) for three months. There are various combinations.
Please keep in touch and ask any questions you like. We are here to support you and inform you, but we are not supposed to give advice. We usually say what we did or what we would do.
It is good to get everything sorted out before treatment begins, so that you can settle down and go through your treatment calmly.
Thinking of you and sending best wishes.
Sylvia xxxx
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Hello Pam,
It was nice to hear from you. I think it is very important not to overdo things. Your immune system needs lots of tender loving care after all the trauma that is a cancer journey. I am a very energetic person and so I know how such people tend to overdo things. We have to learn to pace ourselves.
I must say that the food prepared sounds very tasty, especially those energy balls. I eat plenty of almonds, drink unsweetened almond drink, enriched with calcium and I also eat 100% dark chocolate. I am lucky not to have a sweet tooth. I also eat organic hummus.
I was glad to know that the glucosamine was bringing some relief.
Fond thoughts.
Sylvia xxxx
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Hello lamis,
We have not heard from you on the thread for a while and I was wondering how you are and how your mother is getting on with her chemotherapy. I do hope that all is proceeding well.
Best wishes.
Sylvia xxxx
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Hello Marias,
We have not heard from you in a while. Are you still going through chemotherapy? If so I hope all is proceeding well. I remember you had a problem with looking at your computer and you were staying off it. I hope you will let us know your latest news.
Hello Rhonda and Lou,
How are you both getting on?
Hello Kath (Kathesward),
How are you getting on over there in Australia? I do hope you are feeling less anxious. How is your challenging work going?
To all members of the group – please keep in touch and tell us your latest news.
Best wishes to all.
Sylvia xxxx
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Dear Mary and Sylvia,
I feel very lucky to have found you both, it was just by chance that I found breastcancer.org as I was searching so many websites over four weeks for information to help my sister. Yes my sisters lump very quickly too, although she had been to her GP twice over the last two years with a small lump and pain under the armpit, but the GP unfortunately said 'don't worry, you'l get all sorts of lumps and bumps while your breastfeeding' and never sent her for any scans. The GP didn't really have any experience of breast cancer in breast feeding women, so she feels very sorry for the misdiagnosis.
My sisters lump is extremely hard around the outside, she has stopped breastfeeding since she found out about the lump. She didn't sleep at all last night as baby was very restless and didn't settle all night. So now its two nights that she hasn't slept and she is struggling today. Unfortunately me and mum had to come home today, but we are travelling back up to be with her shortly. I plan to get a spare bed delivered to her house in the next few days, so I can spend 3 days a week at least with her to help out with meals e.t.c and my mum will be there too.
I went to the appointment with my sister yesterday, we have no idea why it was with a breast surgeon and not an oncologist. We have been waiting and waiting to see an oncologist for weeks, and we couldn't understand why we were sent an appointment to see a breast surgeon, especially when they had already indicated that she would most likely be needing chemotherapy first weeks ago. I had assumed that it would be standard care to see an oncologist first after breast cancer diagnosis, but is only because we complained yesterday that they rang us back to give us an appointment for tomorrow to see an oncologist. Me and my sister don't usually complain about anything, but we were not happy with being told it might be another two week wait to see an oncologist, she needs treatment asap. The breast nurse is absolutely lovely, she did everything she could to get an appointment for us tomorrow.
The surgeon explained that he feels it would be best to so chemotherapy first and then do surgery after. Yesterday he spoke a lot about options for lumpectomy or mastectomy, but the MRI yesterday showed two more highly suspicious lesions not far from the primary tumour. We just want the whole breast removed. I started making notes on the different types of chemotherapy yesterday to get an idea of the types of regimens they might offer her. Thank you Sylvia for explaining some of the ways it might be given. I guess they will need to do tests first before they start the chemotherapy, but I hope it will start soon. Its hard for my sister to get sleep at the moment as little baby has been restless, but I am hoping things will settle down. I suggested that maybe she have an extra bed downstairs in case she gets tired during the daytime, just in case she ends up she's feeling ill with hands and feet, but maybe that wouldn't be needed, we just aren't sure what to expect with chemotherapy.
I need to go out tomorrow and see if I can find some green tea extract (egcg) and fresh cranberries (I've only found dried cranberries in the shops) but I'm not keen on the high sugar content of dried fruit. Will also try to look for a suitable dose of vitamin K2 too (I will ask the pharmacist) as I have learn't that it is best to take vitamin D alongside vitamin K2 - if anybody is reading this then please don't take this as advice, it is just something I have read through my own learning, it might be different for everybody depending on their own circumstances. I am a firm believer in the power of good nutrition, my sister has an aggressive IDC so we feel that orthodox treatment is necessary, but in the meantime we are really going for it with turmeric, garlic, onions, cabbages etc to do our best to create the most unfavourable environment for those cells xxxx
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p.s, I am sending you both the biggest cuddle, thank you Mary and Sylvia, we will get through this, I have a lot of hope :-) xxxxx
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p.s Sylvia how do I locate your earlier posts where you talked about how you delayed treatment? I will have a look for those, that will be really helpful. I will see if I can find it now (I've not very good with locating information on the thread due to my limited IT skills) but I will see if I can find it,
Sending you all lots of love xxxx
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Hello Kathy,
Thank you for your detailed and informative post. It is very unfortunate that your GP did not refer you to the hospital when your sister had a small lump and pain under the armpit. Anything like this and GPs should refer you on. They are not experts. The only alternative is to turn up at A&E.
This situation with your sister not getting enough sleep must be quite a problem. She will need to get all the rest she can. This is a good time to try to enlist other people to help, good friends, neighbours and other relatives. You will find that people are only too glad to help in any way. When I saw my oncologist and was arranging to start my chemotherapy, she asked me if I would like to have visits from Hospiscare nurses just to come and talk and generally help. I decided I would and they used to come regularly and we had some good chats. If I needed any kind of help they would seek it out. For example, when you go for chemotherapy treatment, it is a very long day. You can get a special ticket for parking for example and they can get financial aid if you need it. You can get a special disabled badge through the Council when going through treatment. I really enjoyed the visits from these women and I still see some of them in Exmouth when I am out and about. Is your sister alone at home with the children when you and your mum are not there?
I was glad to know that you had complained and that you now have an appointment to see an oncologist tomorrow. You should not look upon it as complaining, you are just being assertive and doing what is good for you. Congratulations on doing that!
I do hope you will get an appointment fixed up tomorrow to start your chemotherapy. I remember having an appointment before the chemotherapy during which I was asked questions about my health in general, had blood pressure checked etc. Before I started I had a phone call from the oncology department to ask me for my weight and height. This is because the dose of chemotherapy drug is based on your weight and height. Your sister should also have an electrocardiogram to check out the heart. This is to make sure all is normal. Chemotherapy drugs can affect the heart. This ecg should also be done after the chemotherapy treatment finishes. Before each chemotherapy session your sister will need to have a blood test. I had the District Nurse come to my home to do this the day before my chemotherapy treatment. This is sent to the hospital and when you arrive you will be told whether everything is OK to continue treatment.
I think you are right to opt for a mastectomy for your sister. I had a mastectomy of the right breast with some lymph nodes removed. Only one was affected, the first node, known as the sentinel node. I did not have a choice, but I would always have chosen a mastectomy.
During my chemotherapy I just used to eat small healthy meals. You will not find fresh cranberries this time of year. The dried ones, as you say, have sugar. I have not seen any frozen ones either. If that were me I would be giving your sister filling foods as she will need to keep her energy up. I found avocados very useful. They are easy to eat and full of good nutrition and healthy fat. I did drink green tea throughout my treatment. I hope this helps and we shall all be thinking of you and your sister tomorrow.
Fond thoughts.
Sylvia xxxx
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Hello again, Kathy,
You asked how you locate my earlier posts, if you come on to this thread you will see page numbers at the bottom of the page. We are on page 318 now, but you will see also page 1. if you click on that you will see the start of this thread and you can go on from there. You will see all the various posts from the people that have gone through the thread, lots of information that I have posted, lots of different links from various people, photographs etc. You can go through it at your leisure. We did have a man on the thread, Peter, of PeterandLiz, who joined the thread to post on behalf of his wife with breast cancer. He read the thread from page 1 to wherever we were at the time. I thought that was really good. I hope this helps. As for finding the thread more quickly, when you are on the forum why not add this thread to Favourites in your browser? This will make it so much easier.
Good luck tomorrow.
Sylvia xxxx
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Hello Val, Amanda and Hanieh,
I hope all three of you are doing well and that we shall hear from you soon.
I hope I have not forgotten anyone of our regular posters. If I have, please let me know.
Best wishes to everyone.
Sylvia xxxx
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hi all
Was very busy in Dubbo for work but it was so nice to think about other things. Work is get extremely busy again so I have to be careful not to overdo it! Our prime minister has just stopped 457 visas which is going to make it very difficult for rural and remote areas to find an experienced workforce particularly in health care.
We are now on the 6 hour drive to Adelaide as our daughter is get married at a winery in the Adelaide hills this weekend. We are about to go thru a small community called Burra which was started by Cornish miners in the early days and apparently the miners used to walk from Broken Hilto Burra with their possessions in wheelbarrows. What a mind blowing thought! I will post a pic of the solar wind turbines near there as we go thru and some pics of the wedding on Saturday.
Finally got my path back from the bcc on my neck which turned out to be caused from the itchingwhilst on taxol and not a bcc after all which was good.
Talk soon
Cheers
Kath
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Hi, Kathy,
I just wanted to jump in and say that the docs talked about doing my chemo first, but then did the mastectomy first after all. I think that doing the chemo first is the more popular way to do it now, because then the docs know whether or not the drug affects the tumor. Also before she has chemo, your sis will have to have a heart test. In my case, I also had to have another small surgery to insert a medication port in my chest. This is a small rubbery device implanted under your skin, they use it to infuse the chemotherapy drugs, it's a way to run the drugs without using the veins over and over. Sylvia did not have this, but not everyone has reliable veins. In my case, there was no discussion, I was told I was getting it and it was another trip to the surgery for me. I had it removed about 2 years later.
Glad you are getting to see the oncologist today, hopefully many of your questions will be answered.
I am leaving on a trip, but will try to stay in touch. Hope all goes smoothly now, and things get going in the best way they can!
Talk to you soon, Mary
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Hello Kathy,
Thank you for your two PMs. I am answering on the thread because I think it is better to share all information and writing PMs as well as answering on the thread is too time consuming for me. I have had many PMs over the years since September 2010 when I started the thread and it gets too overwhelming. It is better to write on the thread and not mention anything you want to keep completely confidential.
I was very interested in all that you had to say about your background related to nutrition, cookery and health. All the people that have passed through this thread and those still on it are all interested in good nutrition and its relation to good health. You will see on my profile at the bottom of my posts that I believe "Let your food be your medicine and your medicine be your food". I was interested that you had done some teaching because I was a High School teacher and have degrees in both English and French. I taught these two languages as second languages. I also have a diploma in Social Work.
On the thread we have had many discussions about food, recipes, health etc. Some of us follow Chris Woollams of Cancer Active and we receive free emails from him regularly. He believes in integrative medicine, a mixture of orthodox, alternative and complementary. He does not like orthodox medicine that much, with relation to cancer treatment, because it does so much harm. You would certainly be interested in some of his books, especially the Rainbow Diet, which you may have already have read.
I read the magazine from Cancer Active, icon, on my first appointment at the hospital for the breast cancer. It guided me a lot and I still read it but it does not seem to come out as much any more. I think everything is mainly going on line.
In her post to you, Mary was talking about the ways that chemotherapy can be administered. It is true that I had my infusions through a cannula which they install through a vein on the back of the hand. I went through all my treatments like that and was lucky not to have a problem with the nurse not being able to find a vein. This sometimes happens. However, I did have experience with a portacath. After I had finished all my chemotherapy, which was about April 28th 2006, having started November 17th 2005, I had to prepare for surgery for a mastectomy. At the time my oncologist thought that I might need some more chemotherapy after surgery, so she asked me to have a portacath installed above my left breast to do this. I had my surgery with breast cancer consultant and at the same time another consultant installed the portacath. The surgery for the mastectomy was fine and I was told I did not need any more chemotherapy. There I was with the portacath inside me and I was well aware of it being there. I was then told it could stay there for ever, without harm, but I would need to have it cleaned out monthly. I had not been told this before, so I was not happy. I went for the first monthly clean and it was fine. The second time I went I was told it was blocked. The result of this was, about December 2006, I had to go back into the hospital for the day to have it removed under general anaesthetic. I was happy to see it go!
Apart from these two ways, there is also a pic line that can be installed for infusions. There are pros and cons for this as well.
You can see from all this that there is quite a lot to do to get ready for chemotherapy. I had already mentioned the ECG that Mary mentioned. There is also the check up and I had a CT scan and a bone nuclide scan to make sure that nothing had spread.
Take things gradually with your sister, so that any decisions she has to make she can do it calmly in her own time.
Take things one at a time. At some point she will probably want to decide about wearing an ice cap to help prevent hair loss, which is caused by the chemotherapy drugs, or facing the baldness and wearing a wig or scarf or something like that. She might also want to think about icing hands and feet to prevent neuropathy. I did not do any of this but others have done. My oncologist was against ice caps for fear of infection. At the time I was unaware about neuropathy and no one mentioned icing hands and feet.
I was told to get dental check ups before starting treatment, as I would not be able to have them during treatment.
I was also told to get flu shots and pneumonia shots, to stay away from crowds and people with colds etc. and not to eat any raw foods or seafood.
I would be interested to know if you are told of any of this.
Finally, remember that on the thread there are people from different parts of the world and their health systems may be different to ours in the UK.
I am going to post what I wrote about my cancer journey on the thread Stories from around the World. The moderators invited me to do this. I know that Mary and Hanieh have also had their stories posted there. I thought I would post mine here to save you the trouble of finding it.
Thinking of you and hope you have made some progress today.
Fond thoughts.
Sylvia xxxx
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Here is my story:
"I have a date that will be forever etched in my mind and that is June 20th, 2005. That is the date on which I was diagnosed with breast cancer. I did this after walking around with a lump in my right breast for a long time, that deep down I knew would bring bad news. On June 20th I saw my GP and after examining my breast and under my arm she told me that she thought I had breast cancer. I remember being very silent and I heard her say that under our NHS (National Health Service) system there would be a two week wait and then I would be called to the hospital. I walked out of her room to where my husband was waiting for me and I just told him the news and about the two week wait. I thought this was a long time and so my husband and I went back into the GP's consulting room and asked how I could get it confirmed sooner. She referred me straight away to a breast cancer consultant who worked in the NHS and privately and within two hours I was with that consultant.
"I felt at ease with her from the very beginning and she would be my breast cancer consultant surgeon for the next eight years. Emotionally I was in turmoil but it manifested itself that day in quietness. The consultant examined me and did a fine needle aspiration as she told me she was certain I had breast cancer but she now had to prove it. She made an appointment for me to see her at her breast cancer clinic for the newly diagnosed the next morning, a Tuesday. That night I slept poorly and my mind kept saying I had cancer.
"I was already finding this very difficult as I had never been ill in my life. That Tuesday was probably the worst day in all of my treatment. My emotions were out of control and I was teary, low in spirits and afraid. I remember sitting down at the consultant's clinic and just looking at everyone there. I was called in and was told to go upstairs for a mammogram and ultrasound. My consultant kindly had a young nurse tail me for the day. I tried to talk with her but I was overwhelmed with emotion that day as I had the mammogram, ultrasound and core biopsy. I kept weeping and developed a bad headache. After these procedures it was back to the consultant for a summing up. She told me I had breast cancer and that I would need surgery, chemotherapy and radiotherapy. She further told me to come back and see her the following week when I had had time to digest it all.
"That evening I remember sitting in the bedroom and crying till I could cry no more. In fact I did not cry any more during my eighteen months of treatment.
"Looking back, I made some decisions that were wrong and I would say to anyone facing a diagnosis of breast cancer or discovering a lump not to delay but to get it sorted out straight away. I delayed seeing my GP and then I delayed having my treatment. This is not something that I would do again.
"The next day I was more together and since I am studious and inquisitive, immediately started to read up about breast cancer. I read a book entitled The Cancer Directory by Dr Rosy Daniels and read it from cover to cover so that when I went back to the hospital I had already written to my consultant asking all sorts of questions about stage, grade, receptor status etc. When I saw the consultant she had the paper with her and went through answers with me. She told me that it was most unusual to be asked all these questions in such a scientific way and that patients usually just wanted to go through the treatment not knowing much. I would advise all newly diagnosed patients to get informed about what is happening to them and to be in control all the time. Back in 2005 I was not into computers and did not research the internet and in a way I am glad that I did not, but took my information from a reliable book. I think that at that time breast cancer was still very much in the dark ages in the UK, especially when compared to the US. Even now I find on the forum that American patients are probably told much more than they are in the UK, although I think UK patients now get more information from their medical team and in a way they have to be given this because the patients are much more informed.
"At that time I remember my consultant telling me that the prognosis was not good because my breast cancer was not hormonal and she could not give me something like tamoxifen to help. She told me I was oestrogen and progesterone negative. Nothing about triple negative as such was mentioned. I was told I had invasive ductal carcinoma. It was not until much later when I finally agreed to treatment that I was told that I was HER2 negative and that it was a good thing to be so. None of this meant much to me at the time but it certainly would later. I would tell all newly diagnosed patients to make sure they have this information.
"In the UK we are told we can get second opinions, that we have the right to do it, but I am not sure whether doctors like it. I think the medical profession has had to open up more in the UK because of the internet and forums like this, where patients are getting lots of information and can speak up for themselves to doctors.
"I finally started six months of chemotherapy in November 2005 after I had been through consultations with alternative doctors, a nutritionist and a homoeopathic consultant to whom my breast cancer consultant referred me. Both told me I needed to have orthodox treatment and I now felt ready for it. The homoeopathic consultant kept me as a patient throughout my orthodox treatment and prescribed things as adjuncts to my treatment.
"Once I started the chemotherapy I was fine and was told that I had sailed through it. The worst part was losing my hair but I soon got used to wearing a lovely wig. I know that many women are really frightened of chemotherapy but there is no need to be. Find out what drugs you are going to be given and why, listen to your oncologist and get information and tips from those that have been through it. You can get through chemotherapy. There is life after it.
"Three weeks after chemotherapy finished I was in hospital for five days for a mastectomy of the right breast. Again I would say to all newly diagnosed patients that you can do this and live without a breast.
"I finished treatment with three weeks of radiotherapy with boosters and found time went very quickly with this. It is tiring going to the hospital five days a week for three weeks but once there the treatment is quickly over. Again, I would say listen to your oncologist and radiologist because they know what they are doing.
"When all this treatment comes to an end you can feel cut off because you are no longer busy going to the hospital. You go into the next phase which is living as normally as possible and then going for your regular visits with the oncologist and the breast cancer surgeon. We all get anxious as the visits come due but most of the time we get good news and come out of the hospital feeling exalted.
"Next June 20th it will be ten years since my diagnosis. Since then I have done everything to keep myself healthy and fit, I have lived life normally and I continue to do everything that I did before. I know I cannot take anything for granted but I just take one day at a time. I was given a poor prognosis but I think that was because, unlike the majority of women, I was not diagnosed with hormonal breast cancer. I am glad that I have not had to take any medication to keep the cancer at bay, so I can say that I am positive about having been diagnosed with what is now commonly called triple negative.
"Looking back I can say that I had a dream team for my treatment. I think my breast cancer consultant and oncologist are dedicated women who go that extra mile. I was also glad that I was offered and accepted to have hospiscare nurses come to visit me when I felt the need. They provided invaluable help with any problems I had, whether financial, emotional or medical.
"As for food during chemotherapy I just kept to the plain foods that I had always liked. I think this is very personal and would say that you have to eat whatever will get you through your treatment. I know mashed potatoes with some poached fish helped me a lot, but mainly I kept to my normal diet, which is to avoid meat and dairy products.
"Most of my treatment was during the winter months so the sun was not a problem, but in my everyday life now I am very vigilant about exposing myself to the sun. I have just what I need to keep up my vitamin D and take vitamin supplements.
"I think the UK commitment to the environment could be improved but in my everyday life I try to avoid chemicals as much as I can.
"I think that the breast cancer charities do a lot of good in this country but I think even more emphasis on cancer prevention is needed. I also think that women need to help themselves as well by following a healthy diet, not smoking, not drinking alcohol (or very little), exercising, keeping to a healthy weight and avoiding chemicals in their everyday life in the home. Very recently I read that reducing calorie intake to keep weight down has been found to help with reducing metastases especially in those with triple negative breast cancer. We have a serious problem with obesity in the UK.
"Most hospitals here have charities offering all kinds of support to cancer patients.
"I discovered Breastcancer.org in 2009 when I had finished treatment. I started reading the various threads and thought we were in the dark ages here in the UK with triple negative breast cancer in particular and decided to start the UK thread. I had no idea that it would still be going after nearly four years and I have felt so enriched by all the women from all over the world that have been on the thread at various times.
"Breastcancer.org is a wonderful forum and providing a marvelous service."
--sylviaexmouthuk, United Kingdom
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Hello Kath (Kathseward),
Thank you for your post. It was nice to hear from you. You will now see that we have a Kathy from the UK with us, so I have to make sure not to mix you up. You will be Kath from Australia.
I was glad to know you are busy but, yes, please remember not to overdo things.
I hope you have a good time at your daughter's wedding and I look forward to some photographs.
I was interested in what you said about that small community called Burra. It sounds as though those Cornish miners had a really tough time.
I am glad to know that you had a good result about your neck. That must be a relief for you.
Take care and enjoy your daughters wedding.
Fond thoughts.
Sylvia xxxx
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Dear Mary and Sylvia,
Thank you so much for your posts, you have both been through so much over the years and come through it, it is so comforting to know that it is possible to get through this and lead a happy life, it gives me and and my sister a lot of comfort and hope. My nephews are very young and the eldest (6 years old) has gone a little quite, he know that mummy is a little bit ill, and my other little nephew (18 months) has just started walking and is still trying to get steady on his feet.
I read through your journey from diagnosis through treatment and I am really sorry that you both had to go through so much, both emotionally and physically with the treatment. Nobody ever expects to be diagnosed with breast cancer and it has come as such a shock, my sister has been going through the same emotions as you have described that you went through. She cried a lot and was extremely emotional at first, but she has become somewhat distanced from it now, her mindset has changed as she knows she will be starting treatment soon.
She was also considering delaying treatment (we never discussed this with our hospital) but privately we were looking at alternative treatments. For example, high dose vitamin C infusions, eating organic vegetables and regular juicing (as described in the Gerson protocol) and Budwig protocol. As my background is in nutrition, I quickly started researching this, as there are many testimonies on the internet of how people have overcome cancer from diet and lifestyle changes. This is amazing and wonderful news, and I fully support this, but I feel it can be very dangerous for those who do not recognise the difference between slow growing and fast growing aggressive cancers. I researched for many weeks, but I never suggested that my sister dismiss orthodox treatment, I asked her to keep her options open whilst I researched.
While we were waiting for different appointments, I took her to see two complimentary therapists, and they both agreed that with this particular fast growing and very large aggressive tumour, orthodox treatment was essential. I am extremely grateful for their honesty, and I have learn't that certain therapies can help reduce side effects of chemotherapy, although I need to look into this more.
I would say to anybody who is in the same position as we were four weeks ago, it is important to know whether you have a fast growing or slow growing tumour when considering any decisions with treatment. We very nearly decided against chemotherapy to go down the alternative route, but I am so glad that we didn't and that will be using a combination of both orthodox (chemotherapy and surgery) and complimentary treatment to get my sister through this.
Sylivia and Mary thank you so much for sharing your experiences of treatment with my, I am going to make a cup of tea and grab my notebook and make some really valuable notes from the advice and pointers you have shared from your experience of chemotherapy and treatment. Especially the information about heart tests, blood tests, ECG, icing of hands, feet and neuropathy, and the ways that you coped through treatment. Thank you so much for sharing your journey with all of us. My sister said her chemotherapy is due to start on Monday 8th May. So we have the next three days to get ready for this. Thank you so so much for helping me to share this information with her, and your right I will make sure that I don't overwhelm her.
I hope you both have a lovely day and will be in touch soon.
All my love, Kathy xxxxx
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Hello Kathy,
Thank you for your post. I was glad to know that your sister will begin her chemotherapy on Monday and I hope everything will go well for her and that she will get through it all with the relative ease with which I got through mine. I really only suffered from fatigue and it did not stop me carrying on with an almost normal life. If I felt tired during the day, I just took some extra rest. The long days at the hospital are wearing but you can get through it. I know there are a lot of women who do have a lot of trouble on chemotherapy and I was very lucky not to have problems with nausea, vomiting, low white blood cells or low red blood cells etc. There is medication and injections to deal with these problems. I was always able to carry on each infusion as my blood tests were normal.
Another time I shall try to tell you about how I delayed my treatment but kept in touch with the hospital, ready to go back.
I delayed for quite a time but I do not recommend this to anyone. Having delayed it, I then started the orthodox treatment with peace of mind and calm. During that time I booked an appointment with a breast cancer consultant homeopathic specialist at a well known hospital. In fact it was the breast cancer consultant at the orthodox hospital who referred me to this specialist at my request. At the first appointment, after examining me, she told me that I needed to have the orthodox treatment, but that she could keep me as a patient and treat me with homeopathy at each stage of that treatment. She did this and I took the medication at each stage. She reported all my appointments back to the breast cancer consultant. The appointments were quite long and beneficial, because she really got to know me. For five years I saw her and I took oral Iscador (mistletoe) which she prescribed. After those five years she thought I was ready to be discharged. This homeopathic specialist also lectured and she asked my permission to use my case, which she considered successful, in her lectures.
During the delay I also saw, just for one consultation, a doctor nutritionist. She also said that I needed to have orthodox treatment, but gave me lots of paperwork about nutrition etc. I knew a lot of it because I had always read about nutrition and health and tried to eat healthily. It was through her that I started drinking green tea, which is supposed to have anti-cancer benefits. I also learnt about bitter apricot kernels. I have now been drinking green tea daily for twelve years and eating bitter apricot kernels. I know the kernels are controversial but I tend to make up my own mind about such matters. I took quite a lot during my treatment and from then on have been eating ten a day. With green tea and these kernels, I think it is wise not to take them on an empty stomach.
I got to know of the nutritionist through the icon magazine that I mentioned. Before all of that I contacted a well-known herbalist whom, again, I had read about in icon magazine. He wrote articles in it. He prescribed wormwood (artemisia) and astragalus. I think they helped. When I decided to go the orthodox route, I contacted him to let him know. He had a policy of not treating patients once they went the orthodox way. By the way, he was dead against juicing carrots because of them being too concentrated in sugar once juiced.
That is roughly my delaying period. It went on between June 20th 2005 when I was diagnosed, and October 2005 when I went back to the hospital ready to start my treatment. I started chemotherapy on November 17th.
When I look back I think all this was very risky and I do not think I would do it again. However, I feel that all the help, advice and treatment I got from the other three people did help. Whether I would have survived without the orthodox treatment, I tend to think I would not have survived. I think the extra treatments helped to make my journey easier. The homeopathic specialist at a well known hospital, the nutritionist and the herbalist were all well known and respected. I do know that high dose vitamin C is used alternatively to treat breast cancer.
As you say, there are examples of patients who survive or we are told survive without orthodox treatment. Mary and I and others have discussed this, but who knows?!
That is about all for today.
Love.
Sylvia xxxx
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Hello Kathy,
Thank you for your PM. I am so sorry you are feeling so down and I hope just having a rest did you some good.
You need to be strong for your sister and tell yourself that she will get through this.
Remember, that one in seven women are being diagnosed with breast cancer and the majority get through it all.
Remember that one in two people are being diagnosed with cancer.
You need to look after yourself so that you can support your sister. The chemotherapy journey is a long one.
Try to have a relaxing weekend and if you can do something enjoyable with your sister and her children. Remember that it is important not to frighten the children, as they pick up on things quickly.
I was wondering whether your sister was told what chemotherapy drugs she will be on.
Be brave, be strong. You will both get through this.
Love.
Sylvia xxxx
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Hi all,
nice to see the thread is as active- still helpful to others and very informative. I am so sorry to see we have new joiners.. but happy for them to have found this fantastic thread.
An update from me to all ..
BRCA 1 and 2 are negative for me. i have also been tested for other known genes to be linked to cancer and all came out negative.
my last follow up appointment was few days ago, all seems fine so far, so i was very happy to hear. i had few months ago a suspicious enhancement in the opposite breast .. Last Thursday's MRI showed that the enhancement had completely disappeared.. i feel so relieved...
i had stopped sports last 3/4 months due to anxiety, which is bad.. added on some weight, which i wish I hadn't done.. i have started this week taking this in hands and I will carry on with that.. 30 min run everyday.. plus will carefully watch what i am eating and drinking.
next follow up with my MO in September. i will do an abdomen scan and blood test for that appointment. until then i am back to my life.
i am sending my regards to all.. .. fighting and staying positive is important.. at times its OK to feel low tired and doubtful but we ought to pick ourselves up and keep living the life we still have.. May we all have enough strenght to fight this and win this!
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Hello 4everStrong,
It was so nice to see you back on the thread and I want to say thank you for your kind words about the thread. Remember you are part of it and you and the others help to make it what it is.
It is great that you have all that positive news about BRCA1 and BRCA2 being negative and other cancer genes all negative.
It is also good news that the MRI scan showed that the suspicious enhancement in the opposite breast had completely disappeared. I can understand how relieved you must be.
I know you are very determined and positive and that you will get back to your usual exercise routine. With everything in the clear, and no follow up appointment until September, you should be able to settle down to a relaxing and happy summer.
I think the thread may be quieter for a while as we get into the end of Spring and summer holidays take over. I am wondering where Mary is at the moment. I am sure she will be making the most of her adventure in Europe. I think Lou in Singapore will have finished her twelve weeks of Taxol now. She was going back to the Philippines to visit family members. Amanda in the UK is planning a holiday in Singapore but I think it is in June. Kath in Australia was at her daughter's wedding this weekend.
We have Kathy from the UK posting on behalf of her sister, who was diagnosed some weeks ago with IDC TNBC and should be starting chemotherapy on Monday. They have been having a very anxious time.
I am living a quiet but busy life in Exmouth. The weather here is quite cool and I have been doing some catching up with my reading. I am reading with great interest Opus Deus – A Brief History of Tomorrow by Yuval Noah Harari. It is fascinating, easy to read and one of those books you cannot put down. I have just bought Bernard Pivot's latest book in French – La Mémoire N'en Fait Qu'à sa Tête. Both are non fiction. I used to follow Apostrophe on the television when I was in Canada and used to do his dictations.
A friend of mine recently went to Paris for a few days. She arrived there on the evening of the May Day celebrations and protests. She said it was quite frightening, but she did love Paris.
Thank you for those words of support and encouragement to those newly diagnosed.
Sending you fond thoughts.
Sylvia xxxx
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Dear Sylvia and everyone,
I hope you you all had a lovely weekend, and are enjoying vacations if travelling and having a lovely break. it was so nice to see the sun out today, it felt like an early summers day. Sylvia, thank you so much for your kind words, hearing about the wonderful books you are reading has inspired me to take up reading again. I like reading book too and am fascinated by reading about the stars and our solar system and the natural world. Nature is so beautiful, my favourite moments are looking up at the sky at night and seeing the beautiful magical stars at night and the moon. I could spend hours staring at the sky at night!
My sister starts her chemotherapy treatment in the morning. I can't believe it is really about to begin, after such a long wait. She is having Paclitaxel (Taxol) and Carboplatin (Taxol/Carbo) followed by EC. I hope this is a good regimen to be on, I need to do a bit of research on it when I wake up. Its late now, my asthma was playing up. Will head back to sleep now, I hope you are all resting well,
Love Kathy xxxx
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Hello Kathy,
I shall write more later but I just wanted to say that the regime they have chosen for your sister is a good one. I was interested to see that she is having a taxane first with carboplatin. She is having paclitaxel (Taxol) which seems to be very current now. I had Taxotere (docetaxel) but they are both taxanes and said to be very effective against TNBC. Carboplatin is one that they have started to add in the past few years.
The EC is Epirubicin (Ellence) and cyclophosphamide (Cytoxan), which are also used most of the time. I had both but i had these first and then the taxane drug.
It is good that she is getting started today. I shall talk more latter on.
Love to both of you.
Sylvia xxxx
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Dear Sylvia,
Thank you, I just spoke to my sister, it has been a long day for her and they have only just administered the other drug, so she said it will be a long day with the chemotherapy treatment. She said she is wearing an ice cap at the moment. She couldn't talk to me for long as she said that she has been told not to move about much.
She told me that her oncologist told her that the treatment plan is part of a trial (the standard arm of a trial - whatever that means) and that there is some evidence to suggest that it may be an effective regimen. I was a bit worried to hear that its part of a trial, I have noticed that most patients are on Epirubicin and Cytoxan first, so I am a bit uneasy about it, I've asked her if its worth us getting a second opinion. But I didn't say much as didn't want to worry her whilst she is having the chemotherapy. Its a big tumour with 8cm, so I just would want the most effective regimen to date, rather than a trial? Or maybe its just my anxiety.
I won't be able to speak to her until later, her husband is at the chemotherapy unit with her. I wanted to go today but her husband had taken the day off work to be there today so we are going to alternate going up. I hope that you are well and that you have a lovely day too. Its a bit chilly today, I think I will put the heating on and make a cuppa and do some reading up.
Sending you lots of love,
Kathy xxxxx
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Hello Sylvia, Mary and all
I've been quite busy with spring gardening. Still working through my neuropathy and knee pain. Therapy is helping my stroke weakness. Still dealing with the after effects of not feeling well sometimes. Then I'll have several good days and can see light at the end of this tunnel. I find it interesting how some get routine scans and some of us don't unless we have symptoms.
Sending my support to those currently in treatment and those struggling to get past the side effects of past treatment.
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Hello Kathy,
Thank you for your posts. It was certainly nice to have some sunny days. I find that we all feel better when the sun is shining. It is supposed to be nice for the next couple of days and then rain on Thursday. That will be good because we do need the rain. Like you, I also get a lot of pleasure out of looking at the environment around me. I love watching sunsets and sunrises, and I know other people on the thread like these as well. There are photographs from some of us on the thread. We also post photographs of our gardens and grounds if we are in an apartment. The first thing I do when I get up in the morning is to open up the blinds and have a look at what is happening in the flowerbeds. I love to watch plants coming into bloom.
I was glad to know that I have inspired you to take up reading again. What kind of book are you reading now?
I was sorry to read that you have problems with your asthma. Do take care. I think these attacks can be brought on by stress.
Going through chemotherapy infusions does take up a lot of the day. Patients just have to accept that chemotherapy days will be complete days, and you will not be able to do much else. The best thing is to get settled with the drip sending the drug around your body and then try to read or just close your eyes and nap if you can.
I was interested to know that your sister has opted for wearing an ice cap in an attempt to save her hair. Others on the thread have done this.
I was very interested in what you said about the kind of regimen that your sister is having for her chemotherapy treatment. I was surprised to read that her treatment plan is part of a trial and is the standard arm of a trial, and, like you, I am wondering what exactly that means. I feel your sister should have been informed in advance that she was taking part in a trial and that she should have been asked for her consent. I am wondering whether the oncologist means that your sister is in the part of the trial where standard drugs are being given to some, and that the others are being given something new. If that were me, I would be asking. I am not one to blindly accept anything.
There could be any reason with your sister's treatment for using the drugs in the order that they are being used.
I remember my oncologist talking about generations of chemotherapy drugs. By that I think she meant that you have certain drugs introduced a long time ago and then later on new ones are introduced and then are called second generation and so on.
I know that fluorouracil (F) dates back to 1956. Recently I read it was still very effective and had a good record. I think epirubicin and cyclophosphamide came later. When I was diagnosed in 2005 I think the taxanes, docetaxel (Taxotere) and paclitaxel (Taxol) were relatively new, at least in the UK. I know they were expensive at that time. Also at that time Taxotere seemed to be used more often in the UK and Europe, and Taxol in North America. I understood they were sourcing them from yew trees that were native to North America and native to the UK and Europe. Somewhere on the thread I seem to remember posting a photograph of a yew hedge that I found in one of our newspapers. I asked my oncologist why I was having Taxotere rather than Taxol, and she told me it was less damaging to the heart.
These taxanes are supposed to be very effective against TNBC tumours. I have no idea whether this is true, but if it is, it could be a reason why it is being used first.
The way you have written in your post seems to say that your sister had the Taxol first and then the carboplatin. That would make it a very long session. When I had my treatment the epirubicin and cyclophosphamide were given together and it was like that every three weeks, for three months. After that I had the Taxotere by itself.
I do not know the side effects of carboplatin, but I am hoping that someone who has had it recently will post in to let us know how they fared.
That is about all for tonight. Remember to tell your sister to drink plenty of water, get plenty of rest and keep looking forward. She should also make sure that she takes the medication for the three days for which they are prescribed. I think doing this will keep certain side effects away.
Make sure you get plenty of rest as well. Carers can get very run down and also need some TLC.
Thinking of you and sending fond thoughts.
Sylvia xxxx
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