Calling all triple negative breast cancer patients in the UK
Comments
-
India is a country of contrasts. It has a fascinating and complex culture. Below is a photo of a group of women at their family home (taken by permission), then a group of monkeys in Ranthambore National Park, and then a visit to the famous Taj Mahal.
We are heading to Mumbai tomorrow for our final 2 days in India - I have learned so much on this trip. The people are wonderful - and there are lots of them - the living conditions range from opulence to squalor. Animals roam freely amongst the people and the traffic is crazy.
Our health has been good and I am so grateful for this opportunity. Will try to post a couple more photos later.
0 -
Galway - I was so paranoid about getting neuropathy that my oncologist reduced the does to 80% . So this might be an option for you if you're comfortable with that? I did get some tingling in my toes and hands during AC, and it generally does not cause neuropathy - that is one of the reasons that I was concerned about the Taxol. I also iced my hands and feet during the treatments. I understand your fear of the taxol, and on more than one occasion I mentioned to my oncologist about quitting the chemo. Are you getting the drug after chemo which boosts the production of your white blood cells?
0 -
Testing
0 -
Sylvia,
I had a long message finished and when I hit "Submit" I was diverted to the front page of this website, by the time I cycled back to our thread my message was gone. I then tried to submit a small explanatory message and that went nowhere! If you see this message, it will be the third I have tried to send this morning.
Mary
0 -
Hello Pam and adagio,
I read your posts with great interest and i shall be answering tomorrow when I have more time.
Thinking of you.
Sylvia xxxx
0 -
Hello everyone,
For the benefit mainly of new viewers and newly diagnosed patients, I am pasting a copy of my personal story that is on Members stories from around the world and that I wrote a few years ago now. The ten years since diagnosis mentioned there will now be thirteen years next June 2018.
If I can do this, so can all of you.
Best wishes.
Sylvia xxxx
sylviaexmouthuk's 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 marvellous service."
--sylviaexmouthuk, United Kingdom
0 -
Hi Ladies,
I met my MO this morning. My mammogram & ultrasound result was fine. He gave me a 4-month appointment to meet my BS for follow up check up. I am still having slight ringing in the ears which was caused by Carboplatin. My fingertips and toes neuropathy have improved. Numbness in my mastectomy side also subsided.
Pam - Singapore indeed is very vibrant and futuristic. I love living here. Ithas been my home for the last 13 years now.
Rhonda - I am so sorry to read about your new diagnosis.
Marias/Sylvia - How are you?
Galway - Going for treatment can be overwhelming. We are always afraid of the possible side effect. I was also reading a lot in this thread after my diagnosis. I want to be prepared for what ever comes. I am greatful for everybody here who shared their experiences. It helped me a lot. I had weekly Taxol with Carboplatin after my 4 rounds of AC. It has it's down days but it was easier for me. The Carboplatin was added because I was only 39 when diagnosed. When the result came out negative for my genetic test my MO decided to discontinue it after 9 weeks. I developed ringing in my ears which is one of it's known side effect.
Mary - It also happen to me one time. I was typing a message in the thread then when I hit submit I lost everything. What I do now is, I will highlight everything that I wrote then copy it before clicking submit. Or other times I will write it down in the notes app first then copy and paste it here. So in case I lost it, I can easily copy and paste it back.
Adagio - Love your photos.
Best regards,
Lou
0 -
Hello Mary, Pam, adagio, and Lou,
I have not had time to sit down and post. I hope to do it some time today.
I was glad to see you are keeping the thread busy.
Best wishes,
Sylvia.xxxx
0 -
Hello Lou
Lou, thanks for the tip on saving posts. Sylvia has told me the same thing, but sometimes I forget, and get long-winded, and it gets lost in the ether; it's very disheartening to lose it all.
I am glad your tests were clear and your side effects seem to be lessening, that is all as it should be, and what we all hope for. To get better and stronger as days go by.
Glad you enjoy living in Singapore, it sounds very exotic to my midwestern USA ears! I get many brochures for trips of one kind or another, Singapore is on my list.
Talk soon, love
Mary
0 -
Hi, Adagio
It's so wonderful you are enjoying India, it's such a big country and I imagine the contrasts are great with such big cities and large rural areas. Love the pictures! And you and husband's matching shirts and hats!
I had almost forgotten that my chemo dose was also reduced when I complained about the neuropathy. In my case though, I think the damage was done after the first dose when the MO thought it would be a good idea to give me the 3 drugs at one time. After I was hospitalized for 5 days he told me he thought it would be good if I could tolerate it, and the regimen would be finished faster if I did dose-dense. Apparently I couldn't tolerate it, and in hindsight, I'm not sure I was in good hands. Hindsight is 20-20!
Are you going to plan another big trip when you get home?
Talk soon, love,
Mary
0 -
Hi, Sylvia
Please tell Raymond thanks for posting the links; to the Mail for the Alzheimer's articles, and for the hint on how to navigate the page on BCO with the Survivor stories. You are the cover girl of that page! I see you have pasted it here now. Good reading! I think the place where I posted my story was elsewhere on this website.
I read over most of the Alzheimer's pieces, I would hope all the good things we do in our daily lives can affect it, but I wonder how much of it is written in our genes? And if indeed it can have roots in stress in our childhoods, that is impossible to do anything about. On my father's side of the family, I had 3 uncles and 1 aunt who developed Alzheimer's in later years, my aunt and 1 uncle spent many years languishing in a nursing home, not knowing anyone. One of the uncles died while living at home, and another was cared for at home for a long time. He had a tendency to go walking and be found miles away so it was necessary he had someone with him at all times.
Half of these relatives were country people, the others lived in the big city. The country dwellers grew their own gardens and their own livestock. They worked hard, and slept well, as far as I know. I am not sure how the city-dwellers ate, but they were all hard workers, and did a lot of walking. I am just saying I don't know how they fit in this picture, they seemed to live a healthy lifestyle, however, this was in post-World War II era, pesticides were coming into wider use. It's much like cancer, just hard to put your finger on any one thing. On my mother's side, she had 3 siblings, one died at 88, still mentally sharp. 2 live on now into their 90s with no unusual mental decline. My mother died in childbirth at 38. They were all raised in the same small community as my father's family.
I only saw one speaker from the Truth about Cancer event over the weekend, he was MIke Adams. He spoke about heavy metals in the body, and how they get there. Most of them a healthy body can eliminate, some of them are hard to get rid of and should be avoided at all costs, such as mercury. He has a Lab that tests substances such as food products, water, hair etc., anything that a person can send him he can test. I have thought of getting my well water tested since I live in a rural area.
I did order the DVDs of the TTAC event, so eventually I will be able to catch up on all of it, and share it with you, a little at a time.
Hope this post behaves!
Talk to you again soon!
Love, Mary
0 -
Hello Pam,
I can finally sit down and do some posting. Your paragraph to Mary makes interesting reading. I do agree that we all need to get back to a more basic and simple way of life. Although I spent the first twenty years of my life in London, life was much more simple. My father had an allotment for many years, which was very successful and brought us lots of vegetables. My mother shopped on a daily basis and there were very few supermarkets. Today I think there is an over-production of everything and I am always thinking about all the waste. The shops here are filling up with Christmas things and I cannot see the sense of all these decorations. They have nothing to do with Christmas. In the supermarkets we already have mountains of boxes of chocolates, tins of biscuits and so on. At the moment this is all mixed up with things for Halloween. It is all nothing but sugar, sugar, sugar!!!
I shall be very interested to know what you give and receive for Christmas. I do not suppose the nonsense of it all will ever end, but it is supposed to be a religious occasion or if we are not religious a family occasion. I get the impression that often people dread these family gatherings.
I think you are right about doctors and the fact that they do not understand how long the healing process takes when it comes to cancer. I do wonder if the psychological side of the disease ever goes away. There is always the lurking fear that it will come back or spread. Only a doctor that has been through this disease can really understand it.
I wonder what will be the next superfood? It seems that there is a never-ending search for something, usually from far flung little countries or islands. I study the "natural" food stores that I have in Exmouth to wait to see what the next new product will be. What annoys me is the continual adulteration (as I call it) of food products. I am amazed at all the different varieties of green tea. I just prefer green leaf tea and usually buy Clipper. I do agree that it is more important to try to eat locally sourced and minimally processed as possible. My main shopping is fruit and vegetables. I try to buy organic but will buy locally produced non-organic if I can. We do get quite a lot of Devon grown or Cornish grown fruit and vegetables, especially in the smaller shops.
It sounds to me as though you are doing everything you can to balance your life and stay healthy.
I think the BBC programmes will probably improve now that the silly season is over. At the moment I am enjoying a series about Russia with a man called Simon Reeve. It is an amazing country.
Many thanks, Pam, for taking the time to catch up with the other people on the thread. Rhonda, Marias and Galway really need our help at this time.
I know you are a great reader. What are you reading at the moment?
Love.
Sylvia xxxx
0 -
Hello adagio,
Many thanks for keeping in touch with us from India. Thank you very much for the lovely photographs. I was fascinated by the monkeys, as I remember a place in Morocco where there were lots of monkeys as you drove through the small town.
I do hope you have a really good time in Mumbai and make the most of your final two days in India. Will you be writing a book about it? I do not think I would feel at ease roaming around and mixing with animals. I think it would make me rather nervous. As for the traffic, I have seen that on travel programmes I have watched and it looks horrendous and chaotic! I do look forward to some more photographs.
As for chemotherapy treatment, with the taxanes, be it Taxotere or Taxol, I think from reading the posts here, that women seem to do better with weekly doses than with three weekly ones. I suppose the doses must still be measured out according to your height and weight. That is how it was done in 2006 when I was having my three months of docetaxel (Taxotere). It makes sense that a lower dose every week would not be so vicious. I do wonder why paclitaxel (Taxol) seems to be more widely used now than docetaxel (Taxotere). My oncologist told me that she had chosen Taxotere because it was less harmful on the heart than Taxol. She was against icing, at least for the head, for fear of infection and in the UK at that time I do not know whether people were offered icing on the hands and feet. My neuropathy in the feet was definitely caused by Taxotere but it is not that bad and does not bother me that much.
That is about all for now. I see that you have been posting for five years now. I am so glad that you have stayed on the forum. I do not recognise many names on the TNs now and have noticed that Cockerspaniel's name does not appear much. I do hope she it alright.
Have a good journey back home.
Love.
Sylvia xxxx
0 -
Hello Lou and Mary,
I am still catching up but will try to post later today.
Thinking of you.
Sylvia xxxx
0 -
Hi Sylvia,
Thank you for taking the time to post a detailed reply. Yes, I am feeling a lot better. I had the 1st cycle of Taxol yesterday Mon 9th Oct17 and Thank God I didn't get any bad reaction. I actually feel better today that I have felt after the AC. As I am having weekly Taxol the dose isn't as large as if I were to have it 2 weekly. I started Vit B Complex so I am hopeful I won't be left post treatment with long term peripheral neuropathy. Sylvia, I am sorry to hear you didn't have a full recovery around that but we have to have gratitude I suppose for what we do have. I got a Ventolin Inhaler for my chest, bought some Manuka Honey and cough bottles so hopefully will get sorted.The health system here in Ireland, and especially west of Ireland isn't up to UK standards I believe. We have neither an adequate public or private health system, with the public health system bursting at the seams as a result of bed closures over the years. I was insured with BUPA, they pulled out of Ireland so now I am with another health provider. I have a Plan B private which doesn't cover everything. I won't bore you with the details....
I read with interest all of the research you have done and continue to do with reference to breast cancer risks. What I might like to add to that is my experience. Just to give you some background information or maybe this is just me .....justifying my actions or my bad choices..... After my husband passed away suddenly in 2012 from a heart attack, my mum in 2013 from pancreatic cancer and 2014 my brother from a heart attack and I had 2 major surgery's. I became hypervigalent around knowing where my teenager daughter...only child... was and if she needed me. At work especially, I used to put my mobile phone down my bra in the left side, not for hugely long periods but nevertheless I did it...........just over that site is where my tumor developed........ I felt so guilty and mentioned it to the radiologist after he put the portocath in. He was very nice, told me not to blame myself and there was no research to back up my concerns. Whether there is or not he new I was vulnerable and was kind to me........I do wonder though! Just thought I would mention that. You take care of yourself and enjoy the lovely sea air. We have plenty of it here in Galway.
Kind Regards. Galway2017
0 -
Hi Lou, I am delighted to hear that your tests were good, such a relief. I started my Taxol yesterday and tolerated it well. So 1 down and 11 to go. I also started my B Complex Vitamin, the only thing I can do so hopefully it will help. I think I will put my fingers into iced water during the next cycle, as my right thumb so sore. You are further on than I am so wishing I'm where you are. You take care and thank you for your reply. Galway 2017
0 -
Hi Sylvia,
I have just read your full story, so touching, so beautifully written, so honest and it's heartening to see that you not alone got through your treatment you have stayed positive in your recovery. Wishing you every good wish for the future. Love Galway2017
0 -
Hi Lou, I am delighted to hear that your tests were good, such a relief. I started my Taxol yesterday and tolerated it well. So 1 down and 11 to go. I also started my B Complex Vitamin, the only thing I can do so hopefully it will help. I think I will put my fingers into iced water during the next cycle, as my right thumb so sore. You are further on than I am so wishing I'm where you are. You take care and thank you for your reply. Galway 2017
Hi Adigio, Thank you for your reply. I am relieved that I have the 1st cycle of Taxol over without any major reaction. I was told that weekly cycles were easier on the body than 2 or 3 weekly cycles, so delighted about that. I feel I am really counting down at this stage and all going well will be finished with Chemo just after Christmas. Yes, I take the Neolasta injection the day after chemo to boost the production of white blood cells. You take care of yourself. Kind Regards. Galway2017
0 -
Hi Galway,
Thank you for your kind words.
I am glad to hear that you have an uneventful infusion for Taxol. It will soon be over before you know it. Weekly seems faster for me at that time.
During Taxol for me my legs seems very heavy but I continue to use stairs with care as a form of exercise. I didn’t ice my hands because when I had my premeds my arms from where my infusionis will turn ice cold and I will feel very cold. They always run my premeds slower and put heat pads on my infusion arm.
Hang on there.
Best regards,
Lou
0 -
Hi Ladies,
Have any of you experienced itching all over your body when you perspire?
I have been feeling it, on and off for quiet some time now. I told my MO last Monday but he wasn’t concerned about it. He didn’t explain anything but he noted it.
Best regards,
Lou
0 -
Hello Mary,
Thank you for your post. I was glad to know that you managed to get to the Alzheimer's articles in the Daily Mail. They were well worth reading, especially as I think a lot of it applied to how a person can end up with cancer.
If you can find your post on Survivor's stories, it would be well worth pasting it onto our thread, as an inspiration for newly diagnosed patients and those going through treatment. I sometimes find the forum a bit difficult to navigate. I do remember that I used to click on Survivor's stories around the world and scroll to read new stories. I was absolutely sure I read your story and that of Hanieh's with nice photographs of you. Recently I went through the Survivors' thread created by the Moderators but do not remember seeing you there. This is such a big site that it can be overwhelming.
I do not know how much of what happens to us in life is down to our genes. Whatever I read seems to point to lifestyle. The other evening there was an interesting programme on the television that is conducted by two brothers, identical twins, and it is all about what goes on in our bodies. It is quite complicated. They seemed to be saying that our genes can be changed by our environment and/or our lifestyle. The title of the programme is The human body: secrets of your life revealed and it was at 9pm on BBC2. Unfortunately that was the third of three. There was a section about a man named Danny MacAskill and his stunts on a mountain bike on Youtube. At one point he cycled backwards downhill on his front wheel as a way to illustrate how our brains learn. A question that arises from some of this programme is if scientists now believe some genes can respond to our experience, for instance, what are the implications? This programme implies that the human body is continually adapting to external circumstances. This has made me ask myself if the fact that my route in life has been for a large part somewhat different to that of my two younger brothers, has made me so different to them.
I was very interested to read about your family and the cases of Alzheimer's or dementia. It is a bit of a puzzle what happens to us in life, especially with our illnesses. As far as I know, on my mother's side, there were nine children, seven boys and two girls and just my mother's older sister developed dementia but very late in life in her eighties and I think it was connected to her adult onset diabetes 2. Apparently diabetics are very vulnerable to dementia. On my father's side I knew just his one older sister. Their mother died young giving birth to my father. He had a step-mother and there were about seven half brothers and sisters but I did not know them.
I think dementia is the worst thing that can happen to us and I hope Raymond and I do not develop it.
I do hope you will post any new information you get from the Truth about Cancer. I do think mercury could be affecting us all and wonder whether amalgam fillings in our teeth give us gum disease. They do reckon it gives us brain disease. I feel as wary of dentists as I do of doctors.
Have you had a Vega test to see about a healthy gut? I read recently that in America people do this routinely, but I have never heard of it here, but we always seem to be behind everything, except beating the war drums!
That is all for today. I am still trying to catch up.
Love.
Sylvia xxxx
0 -
Hello Galway2017,
Thank you for your posts. I was glad to read that you are feeling a lot better. I was also glad to read that everything went well on Monday October 9th with your Taxol infusion. Chemotherapy treatment seems to be very personal. Some think that AC is easier and others that the taxanes are easier. I know that when I was going through EC, epirubicin and cyclophosphamide, that the nurses were calling the epirubicin the Red Devil, because it was red, turned your urine red and was awful in general. I was fine on the three months that I had that. Your AC was really the same. A was doxorubicin and C was cyclophosphamide. These abbreviations get very confusing because sometimes the brand names are used. I always prefer to use the generic names.
I am sure that these weekly doses are easier to handle, so I hope all will continue to go well for you with the Taxol. Remember to take it easy because everything will build up as the treatment continues. Drink plenty of fluids.
Neuropathy seems to be about the worst side effect of the taxanes, either Taxol or Taxotere. As I have said before, the neuropathy does not bother me much.
I was interested to read that you think the health system in Ireland is not up to UK standards. I was surprised to read that, because the National Health system here is at breaking point and I am glad I am not going through treatment now. We have to remember that the NHS was brought in in 1948 in the UK and was a very simple and basic care system. We did not have all this expensive technology that is used at the drop of a hat now or all the expensive drugs. The population was much smaller and treatment was much quicker. I remember how we used to go to see our GP when I was a child, without an appointment, and we would just wait in a small surgery at opening times. Now there is a three week wait here to see your GP and you are only supposed to be allowed about ten minutes per patient.
I am always amazed at the queues at the pharmacy for prescriptions. It is as busy as a local fish and chip shop, perhaps busier. I saw a notice at the pharmacy at Tesco's yesterday which said that there was a four day wait for repeat prescriptions and I could not get over the huge shelf of prescriptions waiting for collection.
I do wonder where the NHS here is going. Some of the problems are being blamed on people living longer but not in good health and having lots and lots of pills. We are also having hospitals, especially local ones, closed and doctors and nurses are in short supply.
I do not know much about the private health system here but it is creeping more and more into the NHS.
I read what you have been going through over the past few years and my heart goes out to you. What a lot of heartache you have had. I was so sorry to read that your husband died suddenly in 2012 of a heart attack, your mother the following year from pancreatic cancer, and then your brother from a heart attack the next year. that must have taken a dreadful toll on you, not to mention your own two major surgeries. You must still be grieving from all of this. I can understand how protective you must feel towards your teenage daughter, your only child. I do hope you have had someone there to help you through all this. I would think all that stress would have undermined your immune system.
I can understand your concern about your mobile phone and your having kept it inside your bra on the left side. You must not feel guilty about this. What is done is done and you just have to concentrate on your treatment and then getting back to a normal life.
We are being given all sorts of information about mobile phones. My breast cancer surgeon thought that they were so much in use now that we would probably end up with an epidemic of brain cancer, but who knows the truth?
There are lots of risk factors that we are told contribute to breast cancer, but as my breast cancer consultant and oncologist said, this does not mean that they actually caused the cancer. I suppose the more risk factors you have the more concern there will be. I remember the questionnaire I filled in on diagnosis and it was all about risk factors. They are early onset of periods, late menopause, not having had any children, having a first child late in life, taking the birth control pill, HRT, and so on and so forth. I think that stress is a big factor, especially negative stress and negative people in your life. There could be other things I am sure and especially unhealthy nutrition, sedentary lifestyle, general worries and anxiety.
I do hope you are feeling better now in general but give yourself time. I hope you have some good support. You can certainly get some here.
Fond thoughts.
Sylvia xxxx
0 -
Hello Lou,
I have just read your latest post and was concerned about the itching. I am wondering what it is. If I were you I would just go to see your GP and ask what it could be. I am not a doctor but was wondering whether it could be some kind of allergy or something related to a weakened immune system due to chemotherapy. Perhaps you need to really moisturise your skin. Let us know how you get on.
Fond thoughts.
Sylvia xxxx
0 -
Hello Angie,
We have not heard from you in quite a while so I was wondering how you are getting on. We would love to hear from you.
Fond thoughts.
Sylvia xxxx
0 -
Hello JesusIsmylight
Thank you for your second PM. I am answering on the thread so that others can help.
Give yourself time to recover from losing your breasts to surgery. It is a big shock for all of us, but we do recover and we do get back to a normal life. There is always the possibility of reconstruction in the future. We all feel shocked and dazed on diagnosis but we do recover and we do get through treatment.
Remember that the information we are given about triple negative receptor status is that it affects a minority of women and that the majority of them are younger women but not all of them. I remember that first of all those with TNBC represented about 10%, now it seems to be 20%. The younger you are the more time the cancer has to come back or spread. We are told that cancer grows more quickly in younger people. These are the facts we are given and we can accept them or reject them.
I think we can all understand that you feel angry. We probably all felt anger, but it serves no purpose and does not do your body any good. You need a good rant, perhaps a good cry, and then you need to settle down and accept or reject the treatment you are offered.
Your mum with BRCA1 and your grandma with BC in her twenties still went on to live long lives. Did your grandma have the BRCA gene as well? Did your mum have any treatment? These two women are living proof that you can survive. That is a good omen for you and you have the incentive to survive for your two young children.
You mentioned two oncologists and what they had to say. Both have said that there is a higher chance of its coming back without the chemotherapy. They cannot give you guarantees. Nobody can. You have to make your own decision. You have to rid yourself of anger and become positive and determined. I delayed my treatment, all of it, for many months from diagnosis in June 2005 to starting treatment in November 2005. I would not do that again. During those months I saw a homoeopathic breast cancer consultant, to whom my orthodox breast cancer consultant referred me. She told me she could help me with homoeopathic treatments but that I needed to have orthodox treatment to get me better. I also saw an alternative nutritional consultant and she told me the same. I contacted a well known herbalist and took wormwood and astragalus. After this I was ready to begin my treatment and started six months of chemotherapy for a large tumour, followed by a mastectomy and followed by radiotherapy. Next June it will be thirteen years since diagnosis.
On the two main threads, Calling all TNs and the one I created, there will be more survivors than non-survivors and more people with no evidence of disease than those with recurrence or spread.
As far as I know the majority of people with TNBC seem to have surgery, chemotherapy and/or radiotherapy.
I can understand you are scared and you will not be alone with that feeling. Nobody can make a decision for you about whether to have chemotherapy after having had surgery. Chemotherapy is systemic which means the drugs used will circulate through the body getting rid of cancer cells. The radiotherapy, which is localised, is used to mop any stray cells.
I hope this helps. Let us know what you decide. I could ask you the following question. Will you be more scared and anxious if you have the treatment than you will be if you do not have the treatment? Answer that and you may have the answer to what you do.
Sending you my very best wishes.
Sylvia xxxx
0 -
HI, Jesus is my light
I do understand your grief after losing your breasts, your fears about chemotherapy, and your anger at the situation you are in. It sounds like your grandmother and mother also dealt with breast cancer. When I was going through the steps one takes in a cancer journey, I got so sick of hearing the phrase, "Just take one day at a time." It is helpful however, after one chooses what steps to take. Then it's just putting one foot in front of the other and following through, knowing you will finish.
It sounds like you are pondering whether or not to do chemotherapy. It is a difficult decision, indeed. I would find it more difficult now that I have learned so much more than I knew then. At the time of my diagnosis I just went with what the doctors said to do, because most of us have no concept of the scope of all this until it's staring us in the face. You do have the experience of having close relatives who have traveled the path, do they offer you any advice? Or perhaps they are no longer with us, I don't know. It is up to you at the end of the day, to decide on your path. There are people who swear by alternative therapies, but I think everyone here on this thread has done the standard treatment. Although some of us now have gained some knowledge about alternative therapies as well.
I understand your anger too, I think it is part of the grief. It will pass, as you grasp the reality of what has happened and realize that you will have to be determined to deal with it. I do wish you the very best, and please know that you are welcome here any time to talk or vent. We have all been where you are, and we are all in varying stages of the journey.
Hope to hear from you again, Mary
0 -
Hi, Pam
I think of my parents and grandparents often, and sometimes wonder what they would think if they could see how I live now, when a trip to the grocery store is an easy $100 a week at least just for me, and that's without meat. Then there are the trips for toiletries, and offfice products, and shoes, and the truck that delivers my salmon, and Amazon boxes at my door and so on and on. They patched clothing, and darned socks, and nothing was thrown away until it disintegrated. My brothers and I would sled on the hills in the winter, no snow boots, just rubber boots with holes in them; we would stay outside till we were frozen, then run in and stand by the woodstove till we thawed and then back outside. We were so happy!
I did can some tomatoes this summer, I made salsa and marinara sauce and canned some whole tomatoes too, with onion and celery and peppers with from my brother's garden. I make bread from scratch once in a while, just to keep familiar with doing it.
I agree most of our TV is not even entertaining anymore, it is so hard to find anything to watch that is not full of political comments and references. It has gotten just boring, I don't want to watch a previously-enjoyed show and be preached at about global warming. Most of the sit-coms are just awful, I don't know who writes these things. Good movies are few and far between, once in a while I will find one I like, and it's usually a movie that didn't do all that well at the box-office. The number of remakes of movies is amazing, seems like people in Hollywood don't have many original ideas, they just take an old movie and add a lot of special effects.
I'm glad you are feeling well enough to travel, and enjoy life again. I am going for a massage this afternoon, so this morning I am going to do some work outside, and probably get as sore as possible, just to make it challenging for her! We are in a period of up-and-down weather, it will be in 80's today and tomorrow, and then down 30 or 40 degrees again. I will be sad when my flowers freeze.
Talk to you later, love,
Mary
0 -
Hello,
Sylvia, I hadn't heard the word "allotment" for garden before. I always think it's interesting how the terminology is so different in the UK. Speaking of waste, we have a church near our house, with a huge, sunny, empty lot, which they've replanted with worthless grass, over and over again, in our drought-ridden area. It drives me crazy, because we have trouble growing vegetables in our small, north-facing, mostly shaded property. I can't understand why they don't plant a garden. If I wasn't working, I would propose one to them, and get out there myself to try to grow something.
I agree that most of this holiday activity has absolutely nothing to do with the original intent of Christmas, and that people often dread the family events. It's so much more meaningful when you choose to spend time together at any time of year - and actually enjoy it. But folks are too stubborn to question tradition. I always say that we should celebrate in the way that suits us, but naturally, that's never a popular point of view.
In the Laura Ingalls Wilder, Little House on the Prairie series, she talks about the wonder of receiving an orange as a gift, and about the magic of getting a candy, a new cup, and a penny for Christmas. I must have gotten a lot of my ideas from reading those books.
Yes, only a doctor that has been through the disease can really understand it. Even with the best ones, our concerns are often minimized. I wonder if there has been an oncologist who is also a cancer survivor?
I just re-read a book that I love, called One Year Off, by David Elliot Cohen, who went on a trip around the world with his wife and three small children. He talks a lot about consumer culture, getting by with less, what they all learned, and how much they grew from their experiences. If I had my way, we would spend months traveling, and getting to know other parts of the world.
Mary, I was really struck by what you said about being happy with a simpler way of living. It's so satisfying to do those things that we can do, like making bread or canning. For me, that's pretty much cooking. And, yes, our grocery bills are large too.
I feel the same as you do about the movies. We have 2 theaters near us, one with recliners, and another without. Nothing I ever want to see is in the fancier, recliner theater. I tend to like independent movies, and those are available soon enough at home.
I'm so glad to hear that you are going out for a massage. That's a great treat that I haven't looked into for awhile. I hope you're in for a beautiful Autumn where you live.
I have to end here, since my lunch hour is over.
Pam
0 -
HI, Sylvia
I have looked for my post on Survivor's Stories, but cannot find it. I know I posted my story somewhere on this site, but as you said, it is a large site and I don't know where it is. I thought it was on something the Moderators started, but it was probably a couple of years ago, at least.
I think it's very interesting to hear that learning new things can help avoid Alzheimer's, it "bends" the brain in a different direction, as you said with the man riding his bicycle on front wheel backwards down a hill. Wow! That would be hard, I can't pat the top of my head and rub my stomach at the same time, and I have tried. I'm sure lifestyle plays a part in developing Alzheimer's, but there just has to be a genetic component. Or, as I remember someone saying, If you live long enough, you're going to get something! I agree with you, it seems like just the worst thing to have, may we all avoid it!
And another thing on genetics, every doctor's office I was with concerning BC, wanted to know if anyone on my mother's side had cancer at any time. I always said No. But I did have one aunt on my father's side that had BC, I wonder why the father's side is not as influential in BC as the mother's side? I don't understand why nobody ever wanted to know that.
At one time I became interested in trying to find out what my ancestors died from, I found I could see the death certificate online up until a certain date. I think about 1960 or so that became harder to get, because when I tried to find my mother's DC I was blocked from it. She died in 1960. But there was a window of time that I had access to just for the looking, and could see what was written on the death certificates, if I could find them. And if there had indeed been a death certificate. I learned that my paternal grandmother died in her 50s from pneumonia following a hernia operation. I have seen 1 picture of her, she was very large. My paternal grandfather died of "natural causes". He was in his 80s, He was one of the lucky ones and died in his sleep. I have seen pictures of him and he looked quite healthy. I never met either of these people, they died before I was born. I found some more great-aunts and uncles, with varying causes of death. Death certificates can be misleading however, my husband's DC claimed cause of death was kidney failure, which was only part of the story. But I guess only one cause is necessary.
I have not had a Vega test, I had heard of it but had to look it up to see what exactly it was. Apparently it tests for food allergies? There is not such a test available around here that I know of, probably in the big cities.
I will post info I get from the DVDs from TTAC. I hope it doesn't take too long to get them, I was sorry to miss the whole thing.
We have had very warm weather, this morning it is 30 degrees cooler than yesterday and rainy. It would be nice if California got some drenching rain on their wildfires, another disaster that has been going on over here.
Have a nice Sunday! Talk to you again soon,
Love, Mary
0 -
Hello Pam,
Thank you for your very interesting post. I shall answer it in the week. At the moment I am trying to deal with a swollen right arm from elbow joint to wrist, which looks like some lymphoedema after all these years. I am having to prop up my arm on pillows to try to help.
An allotment is not another word for a garden. It is something completely separate from a person's house and not necessarily near the house at all. It is a big expanse of land that is divided up into small lots and a person can pay to rent this plot and grow vegetables etc. It was and is still popular. We have them around Exmouth and I have a friend who has one and grows lots of fruit and vegetables etc. She was recently there to collect her apple harvest. She loves to go there for relaxation.
She has also just returned from an adventurous holiday on Vancouver Island in British Columbia, Canada. She was a floating lodge known as Big Bear Lodge and was seeing lots of black and brown bears. She said the lodge was luxurious but the vicinity of bears would not be for me. Raymond and I did drive the length of Vancouver Island when we lived in Canada, but never went bear watching! I wonder if agaio has been there?
http://www.greatbeartours.com/
Talk later.
Fond thoughts.
Sylvia xxxx
0
