Calling all triple negative breast cancer patients in the UK
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Hello Mary,
I have been re-reading the rest of your post.
With reference to gut bacteria and the importance of keeping it healthy, I do believe everything that Chris Woollams states. I think an unhealthy gut is the basis of inflammation and that inflammation is the basis of chronic illnesses. I would think that on the average western diet people have unhealthy guts.
There is no real reason that for a lot of health problems children should end up with the same health problems as their parents. A lot depends on lifestyle and a lot of the time family members blindly follow parents etc. This is not only the case with illness. Children get brainwashed and follow parents with religion, politics and all kinds of things. I believe that truly inherited diseases are fewer than is thought. It is the lifestyle that is inherited.
I am always pleased to see Debra. She always has a lot of interesting information to offer and always has something of interest to say.
The weather has changed here. We are having some well needed rain and the temperature has gone to about 15C. This is the typical weather pattern of the UK.
All the news is about the illegal cladding and Brexit. Goodness only knows where we are going with both of them.
There is so much bad news here all the time. The latest news about the poor quality of our education system should make those so called experts who have caused it hang their heads in shame. We have so much poverty here as well. It is a disgrace.
That is about all for now.
Love.
Sylvia xxxx
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Hello adagio,
Thank you for your kind words about the flowers that Mary and I posted. I think the flowers in the last photograph are gazanias. I know most of the flowers in the grounds here, but sometimes I forget their names.
I do hope you will get good news when you see the doctor on Friday. Be sure to let us know how you get on.
You must feel very excited about your trip to Ireland and to Northern Ireland in particular.
I was very interested to know that your roots are in Northern Ireland and that you were born in Belfast. How did you end up in British Columbia, Canada. It is a strange journey that we go on in life. I was born in London and I have ended up in Exmouth, Devon, via Leeds, France, Morocco, Canada, Essex and then Devon.
Your holiday in Ireland sounds very thrilling and we look forward to photographs. I can understand what you mean by the narrow winding roads. We have lots of them in Devon and some are really too narrow!
I have just bought my latest copy of What Doctors Don't Tell You. I always enjoy reading it, but it is finding the time to do so.
Good luck on Friday.
Love.
Sylvia xxxx
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Hello Sylvia, Mary and all
Things are heating up here weather wise. It is summer after all. I've been busy in home remodeling projects. My entire first floor (over 2500 square feet) is being redone with wood and tile floors. What an undertaking. Though the result is worth it, being out of my kitchen and comfy living space is quite a deal. We did not have the floors we wanted when the house was built 11 years ago. So my husband said enough with being sick, we are going to proceed with living. So doing remodeling projects before we head to St Maarten in the Caribbean in late August. Hopefully I will be able to write some short stories for publication.
So happy to hear from those whose treatments are coming to an end. Last year during this time, it was quite difficult for me. Radiation burns, then a stroke caused by 'radiation scatter to my carotid artery. A year later, even with knee issues and neuropathy, I feel quite well. My energy is getting better each day.
I hope to keep looking forward. With this dreadful diagnosis, there is no 'safe' spot. Recurrence will always be with us. Hopefully treatments will keep improving, and even if I recur, I'll have hope for still living a full and productive life. This is my hope and prayer for all of us.
Val
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Syliva, the end of your post made me laugh. LOL I was not able to find ceremonial grade locally, but ordered it from Amazon. I tried a few different ones, and right now I have the Pure Matcha Organic (actual name).
((waves)) hi to Mary
Sylvia, you don't need to know your page numbers. Go to the search box on the left of the screen, type in your user name in the member name field, and in the search box right above it, type in a few key words you would have included in your posts, and those posts with that information will come up. Now, you might have a few that come up, but you can type in more words to narrow it down. For instance, I know I have written about Metformin, but that would yield a lot of results for me. But I know that I may have typed in "metformin data for your doctors" or something similar and that my posts with that might come up. So I think with a little bit of refinement of key words, you can get the posts you want to appear quicker.
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Where are those last photos taken? Who is the other person in the photo? Must know these things .... love all the photos everyone posts!
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Hello Debra,
Thank you for your post. I was in my local natural food store yesterday and I saw a very small tin of matcha powder at a very high price. It was either £20 or £30. I know the women working there, so I was asking them about it. I told them about culinary and ceremonial, but I do not think they were aware of it. I also think that they were getting matcha with maca and that one of the women was mixing maca in drinks. She said it gave her super energy. I am posting a reference to maca.
https://draxe.com/top-5-maca-root-benefits-and-nutrition/
Thank you for the information about finding past posts. I am actually thinking of not looking back, after a rethink. I want to find a way of putting information in such a way as to make it more two way, so that people post instead of just viewing. For the moment, I am a bit too busy to undertake this and there are not many posts. This thread has been going for nearly seven years and I never dreamt it would last this long! Lots of threads seem to come and go very quickly.
You asked about the photographs. The man in the photographs is my husband, Raymond. We have been married for over forty years. All the photographs of flowers are taken in the grounds of the apartment complex where we have lived for fifteen and a half years. The photographs of Raymond and me are taken in the lounge of our apartment. You can see that it is very simply furnished, minimalist, and modern. The apartment complex is modern.
Sending you best wishes across the ocean and wishing you a happy Independence Day on July 4th. How will you be celebrating it?
Love.
Sylvia xxxx
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Hello Val,
Thank you for your post. It is always nice to hear from you. It sounds as though you have been really busy with your remodelling project.
I think those words from your husband were very wise and that to get on with living is good advice for all of us.
I do hope you get to write some stories for publication. Let us know how you get on.
I think your attitude of being positive and optimistic is the right one to have after going through a cancer journey. We just have to live each day to the full. If the cancer comes back we shall deal with it in the best way we can.
Keep busy and keep looking forward to that holiday in late August.
I do appreciate the strong support this thread gets from the American ladies. You have a good sisterhood.
Fond thoughts.
Sylvia xxxx
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This shares a sample of 5 types and their prices. Price of matcha is definitely not for the faint of heart. lol
BTW who is drinking coffee in this forum - my Onc said okay to drink - anybody else have an opinion or habit?
http://theteacupoflife.com/2015/10/5-of-best-match...
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InspiredbyDolce: I drink a cup every now and again. In winter months I enjoy grinding my favorite flavored beans for a cup. Otherwise my green tea ingestion far out weighs coffee.
I was coffee 'free' for decades though.
Sylvia, I love the pictures. I'm trying to get to a 'minimalist' approach in my decorating. I have too much house. It has served it's purpose. Now we are remodeling, and will possibly sell in the future.
Matcha powder is not for the faint of heart, as far as pricing goes.
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I drink a cup of coffee every day. My MO is absolutely fine with that, but not fine about a glass of wine daily LOL When I was going through my treatments I did not drink coffee at all and not for quite some time afterwards - it has only been in the last 3 years that I have enjoyed coffee again. But it has to be organic and taste yummy - of course!!!
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Hello Debra (InspiredbyDolce),
Thank you for all that information about matcha. It is very easy to get this confused with maca which is said to be another superfood. It is known as maca root and is called an adaptogen and is a member of the cruciferous family like broccoli and cabbage, but due to its unique properties it is considered one of the world's superfoods. I have just read an article about it online entitled Top 5 Maca Root Benefits. It is sold in powder form in the shops. It is full of healthy nutrients. You might like to have a look at it online. I was interested in the information about top 5 maca root benefits, especially 4, energy, memory and mood, and 5, antioxidant benefits.
This powder comes in three colours – yellow, red and black.
I do wonder about all these so-called superfoods, many of which are expensive and come from distant lands. I remember reading once that we should try to stick to the foods that are natural to our own environment and eat foods that are in season.
When I first went to Canada, back in January 1977, I remember that oatbran was much in vogue as a superfood, along with walnuts. There have been all sorts of superfoods since then.
I was interested to read that you are doing a bit of questioning about whether the women here are drinking coffee. This is another product about which there has been a lot of information and debate about whether it is good or bad for you. I am not a coffee drinker but very occasionally I may have a cup. I do enjoy that occasional cup. My husband, Raymond, is fond of coffee, but not a regular drinker. We do have coffee at home for visitors. We buy Colombian coffee mainly, strength 5. We also have decaffeinated for those fleeing caffeine. On the whole, I try to avoid caffeine, because we are told it drains calcium from the bones. I do drink lots and lots of green tea and have strong leaf tea in the morning, but have decaffeinated green tea most of the time.
I think it is interesting to discover what we are all doing and not doing.
Are you taking metformin on a regular basis? I have never been inclined to take it.
How many of you are taking low dose aspirin on a regular basis as a cancer prevention? It is something that I have not been persuaded to take.
Then, of course, there is the alcohol debate. It is listed as a cancer risk and carcinogenic. What opinions do you have on this?
It is interesting to have discussions about listed breast cancer risks, how many of them we had, and what we think was the biggest risk factor in our developing breast cancer.
Happy July 4th to all our American friends.
Sending you all fondest thoughts.
Sylvia xxxx
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Hello Val,
Happy July 4th. How will you be celebrating?
I was glad to know you enjoyed the photographs. I firmly believe in a minimalist lifestyle and in keeping everything simple and organised.
Keep well and happy.
Sylvia xxxx
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Hello adagio,
I am popping in to say Happy Canada Day today. I was listening to the news on the radio and for once it was quite detailed about Canada. It was all about the fact that Canada is 150 years old today. How will you be celebrating? Apparently you have Prince Charles over there for the celebration.
I would think that coffee, like most things, is fine in moderation.
As for wine, it is hard to know what to say. It is listed as a risk factor. I have not touched any alcohol in over thirteen years and before that had an occasional glass of red wine. I suppose we all have to do what makes life liveable for us.
You are in my thoughts as you get ready for your trip over this way.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
I am posting to say Happy July 4th and also to say that I hope all is well with you. Looking back I saw that your last post was June 27th. I know you are a strong poster, so I hope that you are busy and taking a break to deal with other things. Please let us know that all is well or whether you are not feeling so good because of all the pain you experience.
Sending you fond thoughts.
Sylvia xxxx
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Hello Rhonda and Pam, happy July 4th.
Hello Lou, how is the holiday going?
Hello Kathesward in Australia, we have not heard from you in a while. Let us know you are fine.
Hello Hannieh, let us know that all is well with you and if you have decided to move on, let us know.
Hello Marias, let us know how you are and what is going on in your neck of the world.
Hello Amanda in the UK, how are things going with you?
Best wishes to everyone viewing and posting. If you are newly diagnosed, do not be afraid and if you need information, comfort or support, do not hesitate to ask.
Thinking of you all.
Sylvia xxxx
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Hi, Pam
I was not aware of National Cancer Survivor's Day, it passed me by! Here the month of June is full of activities for Relay for Life, which is people grouping together raising money for Cancer Research. The money goes to American Cancer Society. Some are getting disenchanted with the group when they find out how little of the money goes to research and how much goes to the administrative part of the society. Anyway, I am glad you had a good time at your day, I don't think that goes on around here.
Books, books I love books. I moved all my books last week and got rid of some that are not loved and I still have lots of books left! I will check out the Marie Antoinette book, I seem to have a thing for tragic queens.
I hope you are recovering well from the radiation, I think you are finished by now? Now it's time to start healing and I know you are looking forward to some trips!
Talk to you soon, Pam. Sorry it took me so long to respond, my brother paid a surprise visit this week, what started out as a quiet week became another busy one.
Love, Mary
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Hi, Sylvia,
Wow, the time is flying by so fast, another weekend is here. A holiday weekend for us, a noisy one with fireworks everywhere. Lots of crying babies and frightened dogs, our dog used to hide under the coffee table at this time of year!
I was reading your post about the lady who was diagnosed with IDC and hormonal and was treated and given aromatase and inhibitors and later found to have TNBC. That is odd, did they do another biopsy? Or did she get a belated second opinion? It does sound like she has gone as far as she can go with treatment and at least can stop taking the pills which aren't helping her.
My DIL was told that her tumors were smaller than first thought and she may not even have to take the pills because they think it was found so early. Her news gets better and better!
I just saw your most recent post to me hoping that I was not suffering too much pain. Not right now. My brother from Texas paid a surprise visit this week, I was anticipating a quiet week and it became busy! It was pleasantly busy though and not strenuous at all. My pain is from doing the things I like to do outside and it hurts my shoulder a lot, and then my knee joins in as well and it's back to ice packs and heat pads. If I don't do those more strenuous things my pain is minimal and is more like an achy stiffness. But.....I like doing those outdoor things and it seems the only way I will be able to keep doing them is by having the surgery and putting up with a long recovery. My brother left yesterday so now it's into the weekend, I am invited to 2 parties with fireworks and one lunch over the next 4 days! Tomorrow I think I have a quiet day, I hope.
Thanks for posting pictures of you and Raymond, your apartment is very Zen and looks like you, very organized, calm and put together.
Talk to you soon, love,
Mary
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HI, Debra Inspired,
As to coffee, I do drink a couple of mugs of it every morning, I put in some honey that I get from a neighbor down the road a little ways. If I don't have it, I feel deprived, and my morning movement doesn't go right, if you know what I mean! I have tried substituting tea but it just is not the same, although I like tea at other times of the day. I only have coffee in the morning. I drink Puroast Organic House Blend, it has 70% less acid that other coffees, and claims to have 7 times more antioxidants than green tea. I only know I like the taste and it is less acidic, which I like.
Always good to hear from you!
Love,Mary
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Hi, Lou,
I think you look beautiful without your wig, what a feeling of freedom, right? I also quit wearing my wig when my hair was very short and I loved the feeling. Your eyebrows are looking good, did you lose them at all? Mine have never come back very well, I put makeup on them to give them color.
Enjoy your summer travels!
Love, Mary
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Hi Adagio,
I guess you are elbow-deep in travel planning, it sounds like a wonderful trip you will be taking. I get nervous too, before a trip. I worry about everything, and once I am on the way I don't care anymore, just have to get to that point!
Thanks for liking the flower pics, I planted some wild flowers and some native flowers by this little shed many years ago and it continues to please me with the way it looks. The yellow trumpet vine has planted itself there, it is one of those that once it takes root is very hard to get rid of; I have pretty much given up on it and it may be holding the shed together at this point!
My shoulder and knee are aggravated by me doing the things outside that I want to do, which is why I am seriously considering shoulder surgery. I have done therapy, and cortisone, and the shoulder just gets worse; I even checked out stem cell repair, but didn't want to take the chance of possibly introducing a cell with a hint of cancer inside it into a new place on my body. That is a concern, although they say only if one has an active tumor. I am just paranoid so refused that treatment. The knee is arthritic, not too much can be done about it at this point except for the cortisone shot, which is working pretty well.
I have coffee too, with honey in it. Other than that, I don't have too much of a sweet tooth.
Happy planning!! Ireland sounds like a nice, cool place to be in the summer!
Love, Mary
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Hello Mary,
Thank you for your latest post to me.
I do not remember all the details about the woman diagnosed with IDC and said she was given hormonal treatment, only to be told that she was triple negative. It is hard to take everything in. That is why I do not read too many of the other threads, especially if explanations seem to be a bit of muddle. We know that long term medication treatment for breast cancer with positive receptor status can end up causing triple negative status. New patients do need to ask what kind of breast cancer they have, most commonly IDC, meaning of no special type or whether it is a less common type of breast cancer , such as inflammatory breast cancer or others. They need to distinguish the type of breast cancer from the receptor status, ER+, PR+, HER2- or ER+, PR+, HER2+ or ER-, PR-, HER2-, or sometimes a mixture of all of these.
We also know that with a receptor status of triple negative, a patient will have a mixture of surgery, chemotherapy and radiotherapy and that there is no medication available for them to take after that standard treatment.
For those with some kind of hormonal status, there will be tamoxifen or an aromatase inhibitor or a combination of both.
I was glad to know that your daughter-in-law has had good news about her tumours and that they are smaller than first thought, and that she may not even have to take pills. Did she have calcium deposits rather than actual tumours?
It looks as though you will have to try not to do chores that bring on pain. I know that will be difficult when you are not used to it.
I do hope you will have a very enjoyable July 4th. Is it a long weekend or do people have to work on Monday July 3rd? My diary shows me that the Monday is a public holiday in Canada, because Canada Day was on a Saturday.
Thank you for the kind words about the photographs that I posted. The two big paintings in the lounge are ones that we bought in Canada and were among the few things we brought back with us in November 1994 when we came back from Canada.
I have just received a private message from a newly diagnosed patient, which I have answered briefly but am going to post in more detail now, so that others can benefit and also help and support.
I was surprised that she had found me on a thread where frankincense was mentioned. I do look at the alternative threads from time to time, but have not done so in a while, because I do not have enough hours in a day to get through everything. As far as I remember, adagio is the only one on the thread who mentioned using frankincense.
That is about all for now, except to say I have just bought the July edition of the magazine What Doctors Don't Tell You. The heading on the cover is Keep Calm and try this Anxiety Cure. Do you still read it?
Talk again soon.
Love.
Sylvia xxxx
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Hello ElleElleBee,
Thank you for your PM. I have sent you a brief reply.
Before I begin to answer, I thought I would post in this thread my breast cancer story that is also on Members stories around the world. By posting it here, newly diagnosed patients can read it and hopefully it will help them through their breast cancer journey.
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"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 marvellous service."
--sylviaexmouthuk, United Kingdom
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Hello ElleElleBee,
I was sorry to read that you were just diagnosed with IDC breast cancer on Thursday. You will probably be in shock and trying to take all this in. Give yourself time to do this, and, above all, do not be afraid. You can get through this. If I were in your shoes I would not make any decisions until you have got all your information in from your medical team.
You certainly need to wait until you find out what your receptor status is, although the actual cancer journey is the same, more or less, for all of us, surgery, chemotherapy, radiotherapy and then medication if it is hormonal receptor status.
My tumour fell into the 6+cms category, so I had to have six months of chemotherapy before surgery to shrink the tumour, then a mastectomy with seven lymph nodes removed, of which just one, the sentinel node, was positive. After surgery I had three weeks of radiotherapy.
Do not go worrying about spread. Concentrate on getting all the information together and then listening to what your oncologist and breast cancer surgeon think is the best way for you to go.
I had a large tumour diagnosed back in 2005 and I delayed my treatment for about four months until I was sure of what I wanted to do. I would not advise others to do this. During those months I saw a homoeopathic consultant to whom my breast cancer consultant had referred me. I stayed with that during all my treatment and took homoeopathic treatment throughout my cancer treatment. It was on the NHS and the homoeopathic consultant reported all my treatment to my breast cancer surgeon. I saw one private nutritional consultant, just one appointment, got plenty of information about food etc., and dos and don'ts. I did all this after diagnosis in June. Both of these consultants told me that I would need to go for orthodox treatment and so I did.
I do look at the alternative treatment threads from time to time, but I have not done so recently. I have not used frankincense.
I am now over twelve years since diagnosis and have had no return of breast cancer. For twelve years I have drunk lots of green tea daily, and I also eat bitter apricot kernels on a daily basis. I eat plenty of fruit and vegetables, oily fish, nuts, seeds, beans and pulses. I do not eat any meat or poultry, no dairy products, no sugar, no alcohol.
I forgot to mention that on diagnosis I contacted a well known herbalist and he started me on wormwood (artemisia) and the immune booster astragalus. I started reading the Cancer Active magazine icon, which I found so helpful.
I hope this helps as a beginning and I do hope you will come and join us. Tell us a little about yourself and how your lump was found.
Fondest thoughts to you from all of us on this thread.
Sylvia xxxx
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Happy Sunday Everyone,
Lou, you look absolutely radiant. Doesn't it feel great to ditch the wig? My growing-out hair looks bizarre sometimes, but I'm happy to have it.
Valstim, It's so encouraging to hear about your remodeling and travel plans. I love that you're feeling better every day.
Mary, The next big national, (or international?) fund-raiser is Stand Up to Cancer, which will be televised next Sat, I believe. I enjoyed the last one, which I watched while going through chemo. I thought it might be upsetting, but it was so comforting to see how many others had survived their diagnoses.
My radiation ended in Feb, but I don't feel completely well yet. The skin has healed, but my energy levels are not what they were. I still struggle to make it through some workdays and most workweeks. I've added walking into my routine to help with that. I'm also struggling with achy joints and terrible back pain. Yoga helps, so I'm doing that.
No worries about responding. I only respond every 10 days or so myself. Books have taken over my house, but no matter how careful I am about getting rid of them, I can never keep up. I may be in the minority, but the Kindle has been wonderful for me: lit from within, easy on the eyes, lighter than most books, instant purchasing available, and you can load it up without taking up precious space in your house.
ElleElleBee, welcome. You'll find great information and companionship here. As Sylvia may have mentioned, you can do this, and it gets easier to handle.
Sylvia, it's good to see the recent pictures of you, in your clean, uncluttered home.
About coffee, I have a cup or so a day, in addition to my green tea. I'm trying to buy organic coffee now. I drink wine, but limit the amount, and offset it with activity and folate in my diet as much as possible. For me, wine "makes life livable." I use almond milk, "grass fed" cheese, free-range, organic eggs, and extra-virgin olive oil. I buy the highest quality fish, and organic, grass-fed meats that I can. I buy farmer's market, organic berries, and dark, leafy greens.
Before my diagnosis, I was lucky enough to be able to afford to buy most of these things. In other words, I was already eating like this. I don't really have a family history of breast cancer. I don't have any children, but I had a high level of activity. I told my husband - who was convinced that contaminated water was at fault - that it could have been something as unrelated as the years that I spend managing the office at an auto body shop, surrounded by paint and fumes. Or it was none of those factors. Who can say?
This month my husband and I are going on our postponed, short trip to Paso Robles, where we'll check out the Mid-State Fair. I also booked our trip to Scotland, staying in an apartment-hotel in Edinburgh in September. We're celebrating the 4th with family, though we usually stay home. Our dog becomes frantic at thunder and fireworks, so we're boarding her.
As far as summer in Southern California, we had a busy weekend last week at the Dodger game and seeing Queen at the Hollywood Bowl. It's been an expensive, but rewarding time. It feels really good to be able to do something besides go to work and treatment.
I hope everyone has a great holiday and weekend. - Pam
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Hello Pam (Lilip6)
Thank you for your post and the lovely photographs. I shall be posting more later.
Fond thoughts.
Sylvia xxxx
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two of my summer visitors0 -
this is most of my feeders, I have lots of little visitors! Sugar is bad for us, yet It's what they thrive on, I make gallons of sugar water every other day.Mary
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Hello Pam,
It was nice to hear from you. Thank you for your kind words. It is only four months since you finished radiotherapy, so you must give yourself more time. It takes a long time for your body to pick up after breast cancer treatment.
Your energy levels will pick up very gradually and very slowly. Your treatment will have truly undermined your immune system and there is no quick root for it to become strong and healthy again. All you can do is to eat healthy foods to give your body maximum nutrition. I found that after treatment the immune boosters astragalus and pycnogenol helped. From time to time I still take these.
You are bound to get tired at work, certainly more tired than before treatment, so just do your best. Make sure that when you are walking you are doing it in such a way that it is relaxing and therapeutic.
I can understand what you mean about books. I just keep a few reference books now and everything else goes to charity. I was interested to know that you are now using Kindle. I think that probably makes sense. I have not tried it. I do like the feel of a book. At the moment I am too busy with other things, but I am trying to find a way to get back to books. I also have a list of books that I want to read. I was interested to know that you find Kindle easy on the eyes. It is definitely a practical way to read and there is little sense in collecting books.
You seem to be doing fine with your nutrition and we all have to have a few indulgences if it makes life liveable.
Like you, I was also on a healthy diet before my diagnosis and I remember when I had my first appointment with the breast cancer surgeon, she immediately said that I should not have breast cancer. Nevertheless I did have it. There are lots of different risk factors that I got to know during those first days of diagnosis through fine needle aspiration, mammogram, ultrasound and biopsy.
Risk factors are having your periods early, not having had any children, having your first child late in life, having your menopause late, and dairy products.
I have not had any children, I had a late menopause, was not eating dairy but of course it was given to me as a child. I remember my consultant telling me that risk factors did not mean one of them caused the cancer, but if you add up risks they might come to a lot. I think my own breast cancer was probably caused by stress, but there are probably other risk factors involved. I think that the contraceptive pill may be causing a lot of breast cancer and we do hear it mentioned as a risk factor. I also know quite a few women who have not had children and who have had breast cancer. I think it unlikely that individually we shall identify a single cause. We have had it, we have survived, and we have to get on with life.
It is quite possible that your environment was a risk factor in your developing breast cancer, but who really knows? We know that all of us are exposed to toxins inside and outside in our daily existence.
I do hope you and your husband have a good time on your short trip to Paso Robles. Be sure to send us some photographs if you can.
I do hope you will have an enjoyable time in Edinburgh in September.
It seems that everybody is on the move. Adagio from Canada is going to the Republic of Ireland and Northern Ireland, you are off to Scotland, is anybody heading for England or Wales? Is anybody from my side of the pond going over to North America?
Have a good family celebration for July 4th tomorrow.
Take care and be patient with your recovery.
Fond thoughts.
Sylvia xxxx
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Hello Mary,
Thank you for your most interesting photographs. I did not know that birds liked sugar. I do not know too much about birds, but here I would have thought they got their enegy from berries. I suppose the sugared water is a quick fix. Tell me all about the birds that you have. Exmouth is full of seagulls and pigeons. The seagulls can be quite vicious and will steal food out of your hands if you are eating as you walk along the seafront. In the car parks of our local supermarket they will literally stalk you. They have acquired a taste for human food. In the grounds we have robins and magpies, and pigeons which are a real menace. We do hear owls sometimes at night and some residents have seen a couple of woodpeckers in one of the big trees.
Today Raymond and I have been in the town a bit and trying to get a break from duties here at our complex.
We went to one of the garden nurseries and had some pinhead gunpowder green tea. It is a really strong and bitter green tea, but we love it. It was nice to have a bit of a break. I would like a few days to catch up on some reading.
I had another PM from ElleElleBee in which she said she has now been told that she does not have triple negative. She said she is ER+, PR+ but does not mention the HER2 status. It is important that she knows this status because if it is HER2+ she will need Herceptin.
I have just received the latest email from Chris Woollams but I have not looked at it yet.
Take care.
Love.
Sylvia xxxx
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