Calling all triple negative breast cancer patients in the UK
Comments
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Hello adagio,
It was so nice to hear from you and to read your kind words. I was glad to know that you read the thread every day, even if you do not post every day.
It is certainly true that TNBC is such a misunderstood form of breast cancer for which there is no real targeted treatment, but, fortunately, the standard drugs do work for us and keep us alive.
I think people tend to forget that TNBC does refer to our receptor status and that we do not necessarily have the same kind of breast cancer. When somebody posts on this thread or the others connected to TNBC status, I always look to see with what kind of breast cancer they have been diagnosed. I know that the most common is invasive ductal carcinoma (IDC) and I do wonder if the kind of breast cancer affects the outcome more than the triple negative receptor status. I am thinking of inflammatory breast cancer, metaplastic breast cancer or lobular breast cancer, which may be harder to treat in general.
I recently read that more targeted treatment was now being planned for TNBC and that there was a move away from chemotherapy and radiotherapy. Then I read that it was the PARP inhibitors that were coming to the fore. I was quite surprised at this as I thought I had read sometime ago that PARP inhibitors had been disappointing. What do you know about this?
You are quite right to be trying to move away from dwelling on cancer and going more towards embracing health and wellness. I remember way back in 2005, shortly after diagnosis, reading my way through the Cancer Directory by Dr Rosie Daniels and being surprised to read that your oncologist cannot cure you of cancer and that only you can do it. I pondered on those words quite a bit. I think she meant that the oncologist could get rid of your cancer in the short term, but the long term was in your own hands and for me this meant maintaining a healthy diet, keeping active mentally and physically, avoiding too much exposure to toxins in the environment and avoiding negative stress.
Like you, my heart will always be with women going through this difficult journey and helping them through if they want to be helped. Today I read a post on one of the other threads about a young woman of just 32, recently diagnosed with triple negative breast cancer and I think stage 3c. There was no history of breast cancer in her family and she is not BRCA positive. Her chemotherapy drugs have not been working and she has been taken off them and put on Taxol (paclitaxel). I just hope this works for her. What is causing such young women to develop this awful disease? We need an answer to that question.
I shall certainly always be glad to hear from you, whatever happens. I feel that is one of the very positive aspects of this thread. We are small enough to get to know people and they do become our friends.
I must say I admire your determination with your exercise and I am sure it will all be of tremendous benefit to you. You must be super-fit! What we can say is that we are doing our best to keep cancer at bay and that is all we can do.
I do hope you have a wonderful time in South Africa and the UK. Where are you going in the UK?
Fond thoughts.
Sylvia xxxx
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Hello linali (Lindsay),
I was looking back at your post and was most interested in what you said about a day of meditation and Tai chi at a Buddhist centre about 20 miles from where you live. How exactly did you meditate? Were you left in silence to your own thoughts or did you have some kind of guidance to help your mind focus on certain things?
What kind of benefit do you gain from the meditation and the Tai chi? Does it bring relaxation and peace of mind?
I do hope that Damian will make a good recovery. What a lot of stress you have had in your life in addition to coping with a diagnosis of breast cancer. Please let us know how he gets on.
I do hope as well that everything will turn out well for Leigh. It is a pity that he is not getting all of the support that he needs because of cutbacks. I feel that all these cutbacks will have no benefit in the long term. In fact they will probably cause worse problems.
You must be very happy to see your centre flourishing and it would be interesting if we were able to look at it on line. I have never heard of Ograh skin products. Do you use them?
I shall be thinking of you on July 19th when you have your mammogram. That is always a stressful time.
I think that vitamin D is probably the most important supplement that we need to take and we need a daily dose of sunshine to keep us well supplied.
Thinking of you and wishing you well.
Sylvia xxxx
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Hello, I can't tell you how much reading on here has helped me. I live in Merseyside and have been posting on another thread for almost a year with wonderful ladies from all over the world.
I have posted on another triple neg site yesterday as I was in a blind panic.
Received my medical records from the hospital yesterday after requesting them and feel so stupid as no one has ever mentioned triple neg there, just hormone neg. Don't know enough to have understood the implication.
I found my tumour June 2012, removed September followed by 13 rounds of chemo Epirubicin and then CMF. 25 rads also.
All finished six weeks ago and feel pretty good, was looking forward to the rest of my life but after googling triple neg lost it completely !!
Know you shoul never read Dr Google but was puzzled. After reading about you Sylvia I have hope again thank you.
I am 66 years old and a type 2 diabetic who has tried to eat well and healthily at all times, no history of BC in the family but have so many friends who have been on this journey and survived.
I have reflexology ( for the last 15 years ) and receive and practise Reiki which I find lifts the spirits.
I shall keep on lurking and reading all your information.
Sunny here today, what a wonderful change.
Thanks again Edi.0 -
Hello scouser47 (Edi)
I was so interested to read your post and I was so glad to know that you have been helped by this forum. I started this thread to help fellow Brits.
Please do not be afraid about being triple negative and do not worry about what you read on the internet. There is too much doom and gloom and it is only because the medical establishment have nothing to throw at us after the standard treatment of chemotherapy, surgery and radiotherapy. I feel that is something to feel positive about and I am glad that I am not having to swallow down drugs such as Tamoxifen and Arimidex that are used for hormonal breast cancer.
I was glad to know that hospitals are now handing out medical records to patients.
It is true that triple negative does relate to the hormone receptor status. You should know what your oestrogen status is, your progesterone status and your HER2 status. If you are ER-, PR- and HER2-, then you have a receptor status known as triple negative and these receptors do not respond to hormone treatment.
Were you told or have you found out from your medical records what kind of breast cancer you have. The most common kind is invasive ductal carcinoma (IDC).
When you were diagnosed you should have been told this as well as the stage of your breast cancer, whether it was stage 1, 2, 3 or 4 or something in between them. You should also have been told what your grade was. Most of the TNBCs are grade 3 but not all of them. You should also have been tested for lymph node involvement and how many had cancer cells and how many lymph nodes were removed at surgery.
Were you told the size of your tumour?
I was interested to know about the chemotherapy drugs that you had as I noticed that you did not have docetaxel (Taxotere) or paclitaxel (Taxol) which belong to the group of drugs known as Taxanes. They are said to be very effective against triple negative.
I was glad to know that my own case has given you hope. I got off to a very rocky start but I am still in the clear eight years after diagnosis.
How are you coping with your type 2 diabetes and how long have you had it? It is another nasty disease that has to be well managed. I am very interested in it because one of my cousins has it.
It is sadly true that too many people are developing cancer of all kinds and there has to be a reason.
I was interested to know that you have been having reflexology for the past fifteen years. I would love to know what it does for you and would also love to know about Reiki. What does it do that lifts your spirits?
Please post again and say anything you like. It is not good to keep it all to yourself. If you need any more information please ask.
Sending fond thoughts your way.
Sylvia xxxx
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Hello everyone,
I just wanted to say that I hope you all have a good weekend. We are supposed to be going into a heatwave here in the UK but I am hoping that here in Exmouth, Devon, in the southwest, it will be cooler than the heat they are forecasting for London and the southeast. I pity those at Wimbledon for the finals of the tennis.
A special hello to Carolben in South Africa and to Michael in Northern Ireland. I do hope all is progressing well with your treatment.
Best wishes.
Sylvia.
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Hello everyone again,
I am posting some of the information that I posted when I first started this thread. It will be helpful especially to those newly diagnosed, who may not have the time or patience to start from page 1 of this thread, although I think it would be very helpful to do so. The following are different types of cancer to the most common invasive ductal carcinoma (IDC). I hope you will find this useful.
Medullary breast cancer.
This is a rare type of breast cancer that represents 3 - 5% of all breast cancers and affects all ages. It is more common in women diagnosed with the faulty BRCA 1 gene. It is generally triple negative but not always. It has a better prognosis than women with other types of breast cancer. The name comes from the fact that it looks like medulla, the grey matter of the brain.
Lobular breast cancer.
This type of cancer represents about 15% of all breast cancers. It is usually ER+, but can be negative. Most lobular breast cancers are HER-. On the information I was reading there was no mention of progesterone status. Another piece of information mentioned that lobular breast cancer represented 5 - 10% of all breast cancers, and that this type of cancer does not always appear as a lump.
Basal-like breast cancer.
These are usually triple negative, but not all triple negatives are basal.
Triple negative breast cancer.
These can be basal-like but not always. The majority of BRCA1 cancers are triple negative. This type of cancer represents about 20% of all breast cancers. This figure probably includes the various sub-groups of triple negatives.
Paget's disease.
This type of breast cancer affects the nipples. It represents 1% of all breast cancers.
Inflammatory breast cancer.
This is a very serious form of breast cancer and represents 1% of all breast cancers. Women are surviving this because of very effective chemotherapy drugs.
Non-invasive breast cancers ( Ductal Carcinoma In-Situ DCIS and Lobular Carcinoma In-Situ LCIS).
I do not know what percentage of cancers this represents. Some people have told me they are not included in the breast cancer statistics.
Tubular breast cancers.
These are slow growing tube-shaped cancers.
Mucinous breast cancers.
These contain a mucous protein.
Rare breast cancers.
These include sarcomas of the breast.
There appears to be so much more information available since I was diagnosed five and a half years ago. I think that those of you going through treatment today would be advised to obtain as much information from your medical team as possible, because it is in your interests. It is only my own personal opinion, but I think that everyone should know the precise details about their tumour, and the treatment available. It seems to me common-sense that those of us with triple negative should know more than just ER-, PR- and HER2-. I think those of you going through treatment now should know whether it is basal-like, whether it is medullary. I also think that a diagnosis of triple negative should enable everyone to be tested for the BRCA1 or BRCA2 genes. I think the NHS should provide this, as going privately is too expensive. There is a lot of waste in the NHS, and I think that our taxes should give priority to first-class treatment for every patient and accessibility to all available drugs and tests. We have to learn to push, as the American women do.
Sylvia
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Here is more information that I posted on page 2 of this thread and that I think the newly diagnosed will find useful.
I have been reading various references to different breast cancer chemotherapy drugs and noticed that sometimes the brand name is used and sometimes the generic name, so I thought it would be useful to list them in an orderly manner, to help those newly diagnosed and starting chemotherapy, as well as those going through treatment. My main aim in starting this thread was for us all to inform and support. I have listed them, as brand name, generic name and any other information I have. I would be interested to know which drugs any of you are having. When I was going through treatment I had three months in three-weekly sessions of combined cyclophosphamide and epirubicin, and three months in three-weekly sessions of docetaxel. I know different trials were taking place at that time, so different combinations are probably being used.
Brand name Generic name Other information
Navelbine vinorelbine anti-cancer drug,
Gemzar gemcitabine anti-cancer drug,
Avastin bevacizumab an anti-cancer drug and anti VEGF drug,
Xeloda capecitabine anti-cancer drug,
Paraplatin carboplatin platinum-based chemotherapy drug,
Platinol cisplatin platinum-based chemotherapy drug,
Taxol paclitaxel belongs to the group known as taxanes,
Taxotere docetaxel belongs to the group known as taxanes,
Ellence epirubicin a cytotoxic anti-cancer drug,
Doxil doxorubicin a cytotoxic anti-cancer drug,
Lypholized/ Cytoxan cyclophosphamide an alkylating agent,
Carac fluorouracil an anti-cancer drug.
I think in the US PARP inhibitors, such as iniparib are being used. I was told recently that PARP inhibitors were a long way off in this country.
For all of you about to undergo chemotherapy, if it still the same, I remember from my treatment that all of us patients were in a ward specially kept for those of us on chemotherapy. We sat in armchairs and were hooked up to our chemotherapy drugs. The drugs were not prepared at the pharmacy until we arrived for our appointment and before we were checked out to make sure that we were well enough to go ahead. This depended mainly on our blood test readings, especially the haemoglobin reading. The drugs were fed through a cannula attached to the back of the hand. Since I did not know about the ward etc., I was a little perturbed about everything, but soon settled down. You will all do the same. A chemotherapy day is a long day, so just be relaxed about it, and have a good rest when you get home. You will be told before leaving to make sure to flush out your system by drinking plenty of water and to take the pills that they give you for a few days. By doing this, it will help to prevent or alleviate any sickness or nausea. I did not suffer from any of this.
I hope you will all find this useful.
Sylvia
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This was something I posted on page 2 of the thread and it is still so relevant today.
Last week, in one of the newspapers, there was an article about "Why is everybody getting cancer?" If you read it, your comments would be welcome. It stated that cancer rates are doubling or trebling. In fact, it said that breast cancer rates for men are quadrupling. It said that the natural causes of cancer were UV rays from the sun, radon gas, bacteria and viruses. It further commented on lifestyle, with smoking, drinking alcohol, obesity, diet and modern living being the biggest culprits, causing untold damage to our bodies. Also mentioned were pesticides, hormone disrupting and carcinogenic chemicals. Do you have any comments?
Sylvia
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Thanks again Sylvia for stepping up. The information is invaluable.
What are your thoughts on the use of Metformin to help prevent recurrence. There are quite a number of small studies completed now that show significant positive results in helping prevent recurrence (particularly with triple negative). Many of these are with Type 2 diabetics or people with metabolic syndrome but some people without these conditions have been helped. A big study is underway and results should be available in 2014.
Many triple negative patients in the US are getting this from their oncologist, or if he or she won't prescribe (because they are awaiting results from the big study) from their general practitioner.
What do you think?
Welcome Scouser. So glad you found this thread!
Peggy0 -
Hi thanks to al for your comments.
Sylvia, Told on final check up I am triple neg, only because I asked ! Realise web is doom and gloom so will now just look on here.
Tumour was IDC 2.5cm, no spread, and lymph nodes clear.Stage 2 according to my records.Can't find out what grade.
They gave me chemo they said because I couldn't have the hormone tablets, this I understood, don't know why these particular two. My Oncologist is supposed to be one of the best in this country so pray he knows what he is doing.
Diabetes not a problem throughout. I am on Metformin so hope what has been said about them is correct. Insulin late evening and try to behave as far as eating is concerned. ( nothing sugary ) Had dreadful mouth ulceration with CMF chemo and burning pipes so everything hurt, stuck to soft and gentle food and now can eat almost anything without discomfort.
Hope your cousin copes, it is fine as long as you behave and have regular checks especially on your eyes.So many people just eat and drink as normal and wonder why complications arise. My Mum had it too and it is hereditary disease.Reflexology has helped keep me well for so many years, my practitioner is 17 years out from being told she was terminal with another form of cancer. She had 12 months chemo and her cancer it seems is always fatal. She is an amazing 71 year old who looks about 50. Still treating people and travels the world as well.
Reiki is a gentle contact healing in which heat or cold may be felt, I had bad shoulder pain afetr rads one treatment from her and it was gone. She works alongside Doctors and would never stop anyone having traditional medicine. Very restful and a lot of her patients fall fast asleep.
Thanks again Edi
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Edi and Sylvia - I also have 2 Reiki healers every Monday night at my relaxation class - one is at the head and the other the feet. It is such an amazing experience and the power of the human touch is very special and so deeply relaxing that it sends me right to sleep.
I have never tried reflexology. Although I do have acupuncture every week which is also very relaxing and healing.
Have a great weekend.
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Hi Sylvia,
I have a few minutes before I go to town for the usual Saturday morning routine, then home for Tai Chi.
Leigh is home so I may have to cut the class short as he has left a request for pancakes for brunch and then he has to be at the station for 1 15 pm. That I think it will be before the end of the Lions match and so I will need to bring him.
I know many people do meditating to find some kind of inner peace, to blank out the world and it's stresses. The Buddhist kind is a quiet and unguided meditation that I found difficult to do. I cannot completely empty my mind.
At the centre Brigid does a guided meditation incorporating relaxation and visualisation. This suits me better and I use it to allow feelings to surface, confront them in a safe place and then to visualise a healing light surrounding and flowing through my body. It works for me and whist I do not find peace as such, I find acceptance.It is also wonderful to feel the energy from the group and how it can be directed to those who are going through treatment and unable to be with us.
I would love to find a philosophy class in the autumn. I find people and their beliefs fascinating...the reasons why and how they influence their lives. As you may have realised I am a talker rather than a doer. Well I do like to resolve things by doing but spend a while thinking and talking about it.
I also want to receive some training so that I can go with Mary on our outreach programme.
I have had reflexology and find it relaxing and also good to identify problem areas. At the moment we are looking for another practitioner for a few weeks.
I have found this thread so invaluable for information of the right kind. Even though we have access to many consultants at the centre they are very reluctant to talk of new treaments unless they are proven or in trials.
Unfortunately it also seems that the general consensus is that breast cancer has lots of treatments available and the emphasis is on other cancers.I know that this is my perception and that the research done in Galway is ongoing. I really must make an effort to use Mary's connections to find out what is happening in TNBC.They did promise to give me email addresses but that came to nothing.
Well thank you once again, and must go as I have Damian's granola cooking and it smells overdone!
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Hi ladies, I have not actually been diagnosed yet, have my breast clinic appointment on Monday but pretty sure it is cancer. I am in Wirral, and it's lovely to find other people from the UK. I have not had chance to read through all the comments on this post but I will be doing so over the weekend. I just wanted to pop my head in and say hi :-)
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Hi sinfully, sorry you have to be on here but these ladies will help you. Whereabouts are you on the Wirral ? Are you going to Clatterbridge on Monday. Hope news is good but if not and that is where you are, it is the most wonderful place to go through this journey.
Will be thinking of you Edi.Linali and Adagio, Anything that helps is wonderful, our hospital provides some of these free of charge alongside our treatment. After Rads you can have a hand and foot massage plus lots of laughter with amazing volunteer ladies. Makes such a difference to your well being.
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Hi edi, thank you. I'm in Thingwall which is near heswall, do you know it? Yes it's clatterbridge on Monday. I'm hoping I will have some answers on the day. I'm starting to get really panicky now as its so close. It's strange, some days I think everything will be fine and it will just be a cyst but then other days I think it's the worst case scenario. Are you in Wirral too? I've not been to clatterbridge before, I hope they are thorough.
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Sinfullyd,I live in Upton/Saughall Massie. Know Thingwall, used to turn right at Thingwall roundabout to visit my Dad in Pensby.
Clatterbridge is an amazing hospital. You couldn't ask for better. I have just finished nine months of treatment there and now work as a volunteer in the treatment unit.
I was sure I DID have cancer but it was still a shock to be told. They are all so kind and will look after you if your worst fears come true.
They are experts in the treatment for BC and people come from all over, even the Isle of Man.
Anything I can do to help please let me know. Someone with you is useful and a pad and pen to take notes if needed too.
Do hope youre fears are unfounded, keep in touch. Edi0 -
Hello Peggy, adagio, scouser47, linali and Sinfullyd,
I have just switched on the computer this Sunday morning to check the thread and I was so glad to read all your interesting posts. I have to go to Exeter this morning, but I shall respond to you all later on. You have some very interesting things to say.
To Sinfullyd, welcome to our thread and I hope you have good news on Monday. Whatever happens, we shall all be here for you. Waiting is the worst thing, but once you know one way or the other, you will feel better.
Thinking of you all and proud of the quality of your posts.
Fond wishes.
Sylvia xxxx
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Hello everyone,
I thought I would post my avatar. This picture was taken in 2006 when I had just about finished my treatment, so July 2006. I had started my chemotherapy in November 2005, finished end of April 2006, had surgery May 17th 2006, and started radiotherapy quite some weeks later and finished towards the end of July 2006. In the picture I am still wearing my wig which I started wearing after the first treatment of chemotherapy. I wore the wig until about March 2007. One day I just removed it and my hair had grown quite a bit and was very curly and dark. It soon normalised after this. I had no real problems during my treatment, except for tiredness during chemotherapy. I hope this will encourage all of you. You can get through this.
Sylvia.
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Hi Sylvia, what was your hair like before? Did it change when it re grew? Thank you to your kind words. It's so lovely to meet people like yourself who have been diagnosed and come through the other side. My appointment at the breast clinic is tomorrow and I am finding myself panicking today. Very nervous.
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Sinfully, quite normal to panic we have all been through this and felt the same. What has happened so far, did you find a lump or was it found via mammogram ? Edi
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I found a lump, went to docs, got fobbed off, had loads of breast pain so went back to docs, got referred to breast clinic as new lumps were found by examination. No scans as of yet. Have been prescribed codeine to deal with the pain. Original lump is on underside of breast, new lump on top side of breast and very noticeable by touch. Also some thickening which the doctor found. Thanks for the support Edi, I really appreciate it. savanna x
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Savanna, sounds a bit like me, for thirty years had painful lumps. My fab Doc always checked me out. Always said never ignore any lumps. I found this one last year and for once no pain. Wasn't going to have it checked as had been a year before and didn't want to waste their time. Remebered what my Doc had said and this time was BC.
Hope yours isnt but they will sort you out.
Have sent you a private message with my phone no, ring if you need someone to talk to.Edi x0 -
Hello PeggySull,
Thank you for your post. I find it very difficult to know what to believe about metformin and its use to prevent recurrence. I am sceptical enough that anything can be proven positive if that is what researchers want it to do. Metformin is a very cheap drug, so the powers that be will be wanting to extend its use beyond diabetes. It is a bit like statins. The way we are going in this country everybody will be on statins, even though they can cause nasty side effects.
I think it will need much larger trials to prove anything and then I would want to know who is funding the trials and if there is self interest. If metformin can prevent recurrence in people with type 2 diabetes, or people with metabolic syndrome, which I understand to be a pre-diabetic condition, why did the people with these two diseases develop breast cancer in the first place?
Again, I am sceptical enough to think that metformin could be being pushed as a drug to prevent recurrence with triple negative because there is nothing else on offer except more chemotherapy drugs, which are more expensive. We shall have to wait until 2014 to see what happens.
I understand, in fact I read sometime ago, that metformin was being offered for free in certain stores in the US. I do not know whether that was for diabetics or as a breast cancer preventive.
I do not know what the attitude of oncologists is towards metformin in UK. I do know that when I see my oncologist I always ask whether there is anything new for breast cancer, particularly triple negative, and she always says 'no'.
I think we all know that cancer cells love sugar and feed on it, so in that respect I can see how metformin might be useful, but there must be plenty of us who do not have problems with high blood sugar levels but yet we get breast cancer. Of course, metformin is not without side effects and I know women who had to stop taking it.
It would be useful if we could hear from women who have had breast cancer and are taking it to avoid a recurrence.
Thinking about your post, I had to ask myself if I would take it right now to avoid recurrence and I answered that I would not. This is just my personal view.
Best wishes.
Sylvia xxxx
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Hello scouser47 (Edi),
Thank you for your interesting post. I was interested to know that you were told about your triple negative on the final check and only because you asked. I was hoping that in 2013 everything was more out in the open in England, indeed the UK, but now I am wondering. I do think that all newly-diagnosed women should go to their consultants at least armed with the basic questions. I actually wrote down a lot of questions straight after diagnosis and sent them in a letter to my consultant surgeon prior to my next consultation after having the first consultation in which I had a fine needle aspiration and a physical check. At that consultation I was told that she was sure I had breast cancer but that she had to prove it. The next day I attended her clinic at the hospital and had a mammogram, ultrasound, core biopsy and then later that day a consultation with the consultant surgeon again. Breast cancer was confirmed and I had to return the following week for discussions. During that week I read the book 'The Cancer Directory' by Dr Rosie Daniel, made notes and sent off my letter with questions. When I arrived the following week, the consultant said she was impressed with my questions and scientific approach and had written in the answers to the best of her ability and went through them with me. I think all patients should do this and take charge of their breast cancer from the outset. Remember, this is your body. You need to know the kind of breast cancer you have, the receptor status, whether positive or negative (that is hormonal or non-hormonal), the size of your tumour, the stage, the grade, lymph node status, and the proposed treatment and why. Triple negative was not mentioned. I was just told I was negative and that the prognosis was not good because Tamoxifen was no good to me. I was told that I was oestrogen negative and just 5% progesterone which was negligible. I asked whether I was going to survive or die quickly and was told she could not answer that. HER2 and Herceptin was not mentioned until later, when I was told I was lucky not to be hER2+ and therefore did not need Herceptin and that hER2+ was very aggressive.
I did delay my treatment for some months, because I was very afraid of chemotherapy. I think I took a risk here.
Your oncologist would have had a reason for prescribing your particular combination of chemotherapy. When I decided on treatment I had a long interview with my oncologist to discuss drugs and again I went armed with written questions. I was told I was going to have six months of chemotherapy to try to shrink the tumour which was large. This chemotherapy, done before surgery, is known as neo-adjuvant chemotherapy and is often done to shrink large tumours. I had epirubicin and cyclophosphomide for three months and then three months of docetaxel (Taxotere). I asked why I was having docetaxel instead of paclitaxel (Taxol) and was told it was because docetaxel was not as harmful as paclitaxel. It did seem a long journey through this treatment but I tried to live as normally as possible.
I was glad to know that your diabetes was not a problem throughout your treatment. Since you are on metformin it will be interesting to see how you progress in future. I know that diabetes 2 is a difficult disease and that you have to be on a healthy diet, exercise and get your eyes and feet checked regularly.
From reading this thread and others I know that a lot of women have mouth problems, so you have to be careful about what you eat and drink. I think the mouth problems occur because the chemotherapy attacks rapidly developing cells. That is why we have hair loss.
That is an amazing story about your reflexology practitioner. It just shows you that no one knows where their cancer journey will take them.
The Reiki treatment sounds very interesting. It just shows you that what the charity Cancer Active says is true and that we need an integrative treatment approach to cancer, with a mixture of orthodox, complementary and alternative.
Thinking of you.
Sylvia xxxx
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Hello adagio,
Thank you for your post. I am learning a lot today about the complementary treatments that some of you on the thread are using. If it is helping you then it can only be good. I understand there are two forms of Reiki, the Japanese system and the Western one. I have not tried any of these complementary or alternative treatments. Through FORCE charity at the hospital which I attend in Exeter, I was offered aromatherapy and Indian head massage, but I declined them.
Through Hospiscare these things were also offered to patients and carers. My husband, Raymond, tried the Indian head massage at FORCE and the reflexology at Hospiscare. He found them very relaxing. I did, as many of you know, have homoeopathy treatment at Bristol Hospital throughout my breast cancer treatment and beyond.
I was interested to know that you have acupuncture every week. One of my neighbours here swears by acupuncture and Chinese medicine. We have one in Exmouth and he took his daughter there because she was in pain from sciatica and he said she got immediate relief.
I hope you are having some good weather in Vancouver. Our friend from Ontario has just sent us a long e-mail. She said they had been having bad weather until recently. It seems the weather patterns are extreme, it is all or nothing. Here in the south of England we need rain. Exmouth beach has been packed today and I think a lot of people will be unwell tonight due to too much sun exposure.
Raymond and I went to Exeter and it was hell there with a team of men and women playing loud drums with huge batons and it was so loud that it made you feel ill. It was something called Japanese Taiko. I do not think it is suitable in the middle of a busy shopping mall!!!
I hope you have a good week.
Fond thoughts.
Sylvia xxxx
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Sylvia, thanks for your post about Metforim.
In talking, listening to others I have come to entertain the thought that maybe there are different biological/chemical mechanisms involved in an original carcinoma and recurrence. I have no science to back this up but plan to use Google Scholar to see if there is any research on that question.
Just like women on Metforim get cancer so do people who eat very healthy and exercise and keep a good BMI.
Recently I talked to a friend about the latter (food, etc.) and how I was focusing on those to prevent recurrence. She blew up at me for the first time in our friendship saying she had done those things and still got cancer! She continued to do them and was on tamoxifen for five years before she had a serious side effect. Now she is 7 years out and cancer free.
It is indeed a mysterious disease that we must battle on all fronts! Thanks again for your thoughts!
Peggy0 -
Hello linali,
Thank you for your post. It is always nice to hear from you. It sounds as though you had a busy day yesterday. I hope you got to your Tai Chi class and that Leigh got his pancakes for brunch.
I am learning such a lot about all these complementary/alternative activities that you are into. So far we have had Reiki, Reflexology, acupuncture and now Buddhist meditation. I have not tried any of them. I can understand how there is a need to find some kind of inner peace and to blank out the world and its stresses. We are bombarded with so much information that I think sometimes it is all too much for us. Life has become too complicated for our own good. I can understand how you find it difficult to empty your mind completely. My mind always seems to be very alert and seems to work overtime at night when I should be going to sleep. I do not think I could ever completely shut off my thoughts.
I was glad to know that you are getting a lot of help from your guided meditation.
I would be interested to know about your philosophy class if you find one in the autumn. Have you any particular philosophers in whom you are interested?
I do hope you get to receive the training that you want so that you can accompany Mary on your outreach programme.
You see, Lindsay, there is life after work.
Wishing you well.
Sylvia xxxx
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Hello Sinfullyd,
We shall all be thinking of you tomorrow and keeping our fingers crossed for you. If you have any questions after your appointment, please feel free to ask.
It is good for you to have met scouser47 on the thread. What a coincidence that you should be living so close to each other. I am glad for you that it looks as though you are going to an excellent hospital. That is so important.
It is true that we all go into shock when we are diagnosed with breast cancer, but the treatment keeps us busy and the shock goes.
Like Edi, I was sure that I had cancer but when you actually hear the words you are still stunned. As Edi said, it is always useful to go with pen and pad and to have someone with you.
Thinking of you.
Sylvia xxxx
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Hello Sinfullyd again,
You asked about my hair. I had very nice healthy hair before my treatment and I was really worried about the hair loss side of the chemotherapy treatment but I just had to resign myself to it. Before I started the treatment I got a beautiful wig in House of Fraser in Exeter, and that was paid for by the NHS. I was told I was entitled to one wig. It was a Racquel Welch wig and it really suited me. It looked very natural and people thought that I had somehow managed to keep my hair! I still have it just in case. It was a shock when it started to fall out not long after the first treatment. It is now normal and is back to its dark brown colour and is healthy. I take care of it and just shampoo and condition and use a small low power hair dryer. Once it starts growing back it is slow at first, but then takes off. During treatment and until it grew back enough for me to have the confidence not to wear a wig, I used to wear the wig to go out and smart ready made silky turbans in the home. I went through chemotherapy during the cold months here, so I wore these in bed as well, as you can feel very cold without your hair.
Best wishes.
Sylvia xxxx
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Hello everyone,
I hope you have all had a meaningful weekend doing what makes you happy. Face the coming week with optimism and try to pop in to say hello to all your friends here and to help and support those in need.
I was wondering whether any of you heard the snippet of news about the new oncology department at the Christie Hospital in Manchester? It needed to be a longer interview but there was mention of radiotherapy treatment such as brachytherapy and molecular radiotherapy. If any of you have any more details, please post and let us know.
Best wishes.
Sylvia
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