Calling all triple negative breast cancer patients in the UK

Karen_Sheffield

Hello Sylvia

Thanks for telling me about the Rosy Daniels book, I will look on Amazon to see if I can find it.

I totally agree with you that stress is probably the biggest factor in making you susceptible to cancer. Over time it probably weakens the immune system and leaves the way open for something to go wrong. On both occasions I experienced a lot of stress in the years running up to my breast cancers. That is why it is so important to get to grips with my feelings of anxiety and take a more laid back approach to things.

I'm glad you found that listening to your favourite music relaxed you yesterday. Music has the power to change how you feel so easily. I don't listen to enough of it. My old favourite is Santana. Some of their early work went from rock into jazzy sounds and those are my favourite albums. I must listen to some again.

My mother had breast cancer when she was 48 or 49. It was around 1966 and she was treated at the RAF hospital at Halton, Bucks. She had a mastectomy to remove her left breast followed by radiotherapy. She didn't have Chemotherapy but had a hysterectomy. Sorry if my earlier post gave the impression that she had Chemo. Breast cancer never came back. However she developed Rheumatoid Arthritis in her early 70's and was in absolute agony at times. She received Steroids as part of her treatment and I have always wondered if that was why she developed Leukaemia. I have to say she also had quite a bit of stress because her sister developed Alzheimer's disease and the responsibility for looking after her fell largely to my mum.

While doing some family research I came across an aunt of my mother's (her father's sister), who had died at the age of 29 with breast cancer and I have ordered the death certificate for my great grandmother just to see whether she had it too. I have been referred for genetic testing and have already completed and sent back a form with these details on, I'm just waiting to hear from them. Although it is in the family neither of my mother's sisters developed it. Of the three of them my mother was the biggest worrier!

Anyway, I hope you are enjoying your day.

Kind regards, Karen

Maria_Malta

Hello Sylvia and friends  Was very busy with my work last week, then went to Italy for a long weekend to visit a friend and we stayed in a b&b in the middle of what is called Tuscan Romagna...beautiful beautiful spring days and perfect weather...lovely walks and delicious food as you can imagine.

Although I'm sorry to see new faces here, I'd just like to say that I was diagnosed with a large tumour over a year ago now, had chemo, a bilateral mastectomy, and radiation for 3 weeks, and when I visited my bs this morning he said that it's OK for him not to see me again, and I only need to visit my oncologist on a regular basis from now on!  So time WILL pass, you WILL manage whatever treatment you will need to have, you WILL make it through surgery, and you will find lots of help, support and advice right here!  Good luck!

sam52

Hello Sylvia

Thank you for your wishes for my birthday (it was the 14th March)......I didn't expect you to remember, so I am very touched.

I broke up from school last Thursday, and went to visit my father for the weekend. It is quite hard going now, as there is so much I need to do for him now. The first thing that greeted me when i got to his house was a wet patch on the hall ceiling which I discovered was from the central heating boiler, which is upstairs in the airing cupboard.I had to call an engineer out to fix the problem that had been caused by the previous engineer when he 'serviced' the boiler.Just more stress to add to all the other things......

I hope to have a bit of a rest as it is now the Easter holidays, but several people have already made claims on my time......

I am sorry to hear you are still not 100% after your infection; it must have really taken it out of you.I hope you will take things easy and get yourself really better.

With love,

Sam

christina1961

Sylvia, I hope you will be feeling better soon.  I know you stay very busy and hope you have time to rest.

B B King is called the "king of the blues" - he has a wonderful band with brass ensemble to back up his guitar, keyboardist, and drummer.  I really don't remember much of his bio, except that he started playing guitar and performing quite young (probably mid teens) and even now I believe he plays 240 shows a year. There is a recent article in Rolling Stone magazine about him that I plan to read, as seeing him in concert sparked my interest.

sylviaexmouthuk

Hello Karen_Sheffield

Thank you for your post. I have seen the Rosy Daniels book on Amazon.

I was glad to know that you agree with me about stress and making a person susceptible to cancer and a whole load of other illnesses. I definitely think it weakens the immune system and makes our bodies malfunction. The western lifestyle is not relaxing enough. Like you I experienced a lot of stress and a lot of change in my life prior to developing breast cancer. I was diagnosed in June 2005 and my breast surgeon said she thought that it had probably started in 2002, judging from the size. In January 2002 my husband and I moved to Devon and there was a lot of stress after our move, not to mention all the stress involved with moving. My older brother died very quickly in October 1995 of cancer, disseminated adeno carcinoma that was in the liver and the pancreas but the death certificate said primary unknown. We always thought it was bowel cancer, but one of my medical team did not seem to think that a primary bowel cancer could go undetected. He died within a month of diagnosis and we were all in shock. He was just 56 and recently retired from teaching. Looking back over my life I have had a lot of stressful events. We are told that it is not the stress, but how we handle it. I can appear calm and strong, but inside I am a worrier.

I do agree that it is important for you to get to grips with your feelings of anxiety and try to be more laid back, but I know this is easier said than done.

I do hope you will get to listen to some of your favourite music, as it is so good for calming and soothing the nerves. I think we all have to learn that life is too short to worry ourselves silly.

I was very interested to know about your mother's breast cancer. She had it at quite an early age.

With your first diagnosis at age 41, I am surprised that you were not offered genetic testing at the time, but it was probably not being done. Even today, in the UK, you seem to have to fight for genetic testing. I asked about it and even had an interview with a genetic nurse, who asked me a lot of questions and took a blood test for DNA. She told me that she did not think that I needed genetic testing and so would not be referring me to a genetic specialist. She thought that I was unlikely to be BRCA1 given my age at diagnosis and given that my maternal grandmother had breast cancer in her seventies and died from metastatic breast cancer after surgery and radiotherapy treatment. I feel there is a lot of cancer on that side of my family but, apart from me, it is in the males. My mother and her sister did not have any cancer. I have a lot of male cousins on that side, but just three female cousins, none of whom, so far, have any cancers.

I was interested to know that your mother had had a hysterectomy. I wonder what the reason for that was? It could be that the Rheumatoid Arthritis in her early seventies had no connection with the breast cancer and treatment. I do not know whether there is any research in this respect. However, I definitely remember reading about cancer treatment and development of leukaemia later in life. I can imagine how stressful it must have been for your mother looking after her sister who had Alzheimer's disease. I think that any kind of dementia must be the worst disease that anyone can develop.

I was most interested to know that you have been doing some family research. Your mother's aunt was extremely young at 29 to have developed breast cancer. With what we know about TNBC and how it affects mainly younger women, it certainly would make me wonder whether that is what she had. I shall be very interested to know what you find out about your great grandmother.

I was interested to know that you have now been referred for genetic testing. I am sure we shall all be interested to know what this involves, especially in the UK. It must be more than just a DNA blood test. I suppose they will be looking into all kinds of genes. So much more is known nowadays.

We have to remember that breast cancer can also be passed down on the male side, not just the female one. I know very little about my father's side of the family. His mother died giving birth to him and he had just a sister. Neither of them had cancer. His father remarried and had seven more children but I do not know anything about them. On my mother's side there were her and her sister and seven brothers. Of the seven brothers three have died of cancer.

Here in Exmouth we have had a big change in the weather in the past two days and we are back to winter. It has been raining most of today and been very dull and overcast. We need the rain and if it continues I might be able to do some digging in the grounds. The soil has been rock hard. If the weather does not improve it will be the usual Easter Bank Holiday weather that we get here.

I hope you have a really enjoyable bank holiday weekend.

Best Wishes.
Sylvia

sylviaexmouthuk

Hello everyone

Just taking a break to prepare dinner and then I shall answer the rest of the posts.

Thinking of you all.
Sylvia

sylviaexmouthuk

Hello Maria_Malta

Thank you for your post and thank you for brightening up our days with your details about your long weekend in Italy. It sounds as though you had a really lovely time.

Thank you for encouraging the new women posting on the thread and for anyone viewing. This is just what we need. Those newly diagnosed with breast cancer need to know that they can get through this treatment and then get on with their normal lives.

It is good news to know that you do not have to have any more check ups with your breast cancer surgeon and that you will have regular visits with your oncologist.

I would like to repeat what Maria has said. Time will pass, you will get through surgery, chemotherapy and/or radiotherapy and will come out the other side. Look after yourselves through treatment and try to keep your mind occupied with other things.

Wishing you, Maria, a very happy Easter weekend. Keep in touch with us all.

Best wishes
Sylvia

sylviaexmouthuk

Hello sam52

Thank you for your post.

I cannot believe that almost a week of your holiday has already gone by. I am sure that your father was very pleased to see you and I know that you will have done everything in your power to help him. I can imagine how you felt when you saw that wet patch on the ceiling. It is a nightmare when there are problems with the boiler. As I live in apartment a leak is something that is always a source of worry. Raymond and I keep a strict eye on everything. Fortunately we are on the top floor of a three storey building so we do not have to worry about leaks from other apartments. I do sympathise with that word "serviced". I sometimes wonder whether servicing causes more problems than not servicing. I sometimes have the same feeling about going to see the doctor or the dentist!!!

I do hope you will be able to have some relaxation time during the weekend. Have you any plans?

I hope you will be able to relax with a good book. What are you reading these days? I find it very hard to find a book that can hold my attention. I used to love the novels of Graham Swift and a month or so ago I bought his latest book "Wish you were here", but I could not get into it. I am now trying to read "The Righteous Mind" by Jonathan Haidt - Why Good People are Divided by Politics and Religion. It is non-fiction and a bit heavy. Raymond and I are sharing it. It makes a change for him from his Linux magazines!! I might try to read the latest novel Sue Townsend entitled "The Woman who Went to Bed for a Year". She is usually hilarious.

I do hope you will have some time to yourself, even though several people have already made claims on your time. Tell them to "Please take a number"!!!

I have marked up your new thread as favourite. It is the usual thing. There are always more views than posts. What you are doing is worthwhile.

I do hope you are keeping well. You are an encouragement to all of us.

Love Sylvia

sylviaexmouthuk

Hello christina1961

Thank you for your post and for your kind words. I am making an effort to have some time to myself. I keep reminding myself of some of the first advice I received when diagnosed, which was to learn to say "no". It is difficult because I have a natural inclination to help people and people seem to come to me for help. If it is something technical they come to Raymond. Last Saturday morning our telephone rang at 5:30 am and woke us up with a start! There was a problem with a burglar alarm malfunctioning in the apartment of an elderly neighbour of 87, living alone. The alarm had started sounding at 5 am. The lady was so upset. There was no paperwork for the system. We had to let it wear itself out but it soon started off again. I rang around and got an alarm engineer to come and disable it. We did not feel quite right for the rest of the day.

Thank you for your information about B B King. I find it truly amazing that he plays 240 shows a year. That is probably what keeps him going.

I hope you have a good holiday weekend. Easter is quite a big thing here. It is the great liberation after Christmas with families getting together. Unfortunately it does not look as though the weather is going to very good. Everyone will enjoy there Easter eggs and Hot Cross buns, no matter what the weather sends us. Scotland and the north of England have just had a lot of snow and there are many homes without power.

Keep well. Best wishes
Sylvia

sylviaexmouthuk

Hello everyone

I am posting a couple of snippets of information that I found in yesterday's Daily Mail. The first one is entitled "Why Stress Really Does Make You Ill" by Fiona MacRae - Science Correspondent. It is all about a study that shows how long term stress plays havoc with the immune system, raising the odds of catching a cold.

The article says the same process could also explain the role of traumatic events in raising the odds of illnesses from heart disease to depression. As you know many of us think it also plays a role in causing the development of cancer.

Apparently scientists in the US questioned 176 men and women about difficult experiences they had been through in the past twelve months. Drops of the common cold virus were dripped into their nose and scientists checked to see if they had caught the germ. It was discovered that those who had been under stress were twice as likely to develop a cold.

The important thing was that tests showed their immune systems had become less sensitive to the stress hormone cortisol, which dampens the immune system. Because of this, a part of the immune reaction called the inflammatory response was allowed to grow, leading to the symptoms of the cold.

Inflammation which can show itself as redness, itchiness, swelling and pain, occurs when the immune system spots an infection and is vital in fending off disease. When this inflammation persists it raises the risk of many illnesses.

We have all read bits about inflammation and breast cancer.

The other piece of information is entitled "Brest Cancer Patients Treated Needlessly" by Jenny Hope - Medical Correspondent. It is a short article that I would urge you to read. The gist of it is that, according to researchers, up to a quarter of breast cancer cases detected during mammograms are "overdiagnosed" and would not have caused symptoms in the woman's lifetime.

Apparently, researchers found that many healthy women are getting an unnecessary diagnosis of pre-cancerous conditions that are unlike to develop and yet they are receiving treatments that can cause harm including surgery, radiotherapy and chemotherapy. It further states that "mammography might not be appropriate for use in breast cancer screening because it cannot distinguish between progressive and non-progressive cancer".

We are once more facing the question of whether screening causes more harm than good. We also are faced with asking ourselves whether breast cancer survival is more to do with advances in treatment.

I know there has been a lot of recent news about the pros and cons of mammograms and I was wondering what you all think. I had refused mammograms because of everything I had read and had my first mammogram when I discovered a lump. Since then I have had about three and I do worry about them. I also felt guilty when I discovered a lump that I had not been having mammograms!

That is all for now.

I want to wish all the very best to everyone on the thread. Special greetings to mccrimmon324 (Heather), BernieEllen, bak94 (Brenda) and to all those who have posted in the past. I hope you are all viewing if not posting.

Best wishes
Sylvia

sylviaexmouthuk

Hello christina1961

I was so sorry to read that your former mother-in-law has been diagnosed with advanced lung cancer. It must be a great worry for you and her family and I do hope that she will be OK.

Hello bak94 (Brenda)

I have just been catching up on the threads and was so sorry to learn that you are having problems. I was hoping that with the end of your radiotherapy that it would be full steam ahead with no problems. I do hope that your medical team can solve these problems of swelling and possible infection. I saw that there possibilities of trials for metformin and another one for Herceptin, but if I have read correctly you do not qualify for them because of previous treatment. Please let us know how you get on with everything.

Hello mccrimmon324 (Heather)

I do hope you will soon be clear of your pneumonia.

I just wanted to wish you all the best with your move back to Pennsylvania. I know how much you miss the seasons there. I hope everything works out well for you now that you are bidding farewell to Florida. Look after yourself.

Best wishes to you fine American ladies.
Sylvia

sylviaexmouthuk

Hello LintRollerDerby (Betty)

Just posting to say that I hope all is fine with you and to wish you a good holiday weekend. Take care.

Best wishes,

Sylvia.

sylviaexmouthuk

Hello everyone

I was just browsing through for any latest news on TNBC and came across the following link. I thought you might be interested in this. It is about how some Canadian researchers think they have cracked the genetic code for TNBC.

http://www.ctv.ca/CTVNews/TopStories/20120404/triple-negative-breast-cancer-study-120404/

Best wishes

Sylvia

Maria_Malta

Wow Sylvia, that's brilliant news... early days yet, I know, but if they're talking about trials then scientists must really believe they're on to something!  And like the rest of modern medicine, treatments and cures lie mostly at the genetic level...

BernieEllen

Hi everyone, had a bit of a shock today. Had to see GP because I have nerve damage from the rads and can't use right arm properly plus have to have x rays - looks like I have osteoarthritis in the hips. Will I was there he told me my records for my diagnosis had been amended from Stage I to StageIIb and the tumour was double the size I had thought.

Maria_Malta

Bernie, Sorry to read about your 'surprise' yesterday, but I do think that staging a tumour can sometimes give false assurances, or the reverse... in my case, having had neo-adjuvant chemo, doctors couldn't stage tumour accurately as by the time I was operated there was very little left of the original lump.  From reading these boards it's clear that things can change incredibly quickly so what's important is that tumour reacted to treatment..  The nerve damage and osteoarthritis sound really uncomfortable..is there anyhting that you can do?

sylviaexmouthuk

Hello Maria_Malta,

Thank you for your post. I certainly hope that we are now on a path that will lead us to find out more about TNBC with more treatment options. We have to keep looking for more news. Why is it that we have ended up with such a complicated type of tumour?

Keep well and keep posting.

Best Wishes,

Sylvia.

sylviaexmouthuk

Hello Bernie_Ellen,

I was sorry to hear that you are having some problems with your arm after radiotherapy,  but I am sure that everything will be alright.

Do not worry about the stage. It is irrelevant as you have finished treatment successfully. I do sometimes feel that perhaps too much information is bringing us more anxiety than peace of mind. I sometimes wonder whether we would be better off when diagnosed just being told that we have breast cancer and that it can be treated. This diagnosis of TNBC must be so frightening to so many women. I was not happy to read in the latest research 'this deadliest of cancers'. It is not right.

Have a good weekend and let us know how you get on.

Best Wishes

Sylvia.

BernieEllen

Thank you Sylvia.

I hope everyone has a peaceful weekend.

Happy Easter. 

sylviaexmouthuk

Hello everyone

Another short article that I found in last Tuesday's Daily Mail was entitled "By the way...To drink or not to drink - what's a girl to do?"

What this article states is that drinking even quite small amounts of wine increases the risk of breast cancer. It states that in a young woman the risk of coronary heart disease may be very low, and the increased risk of pushing up the chances of breast cancer may outweigh any possible benefits for the heart.

It further states the balance might be the opposite in middle aged women, but this is just not known.

There is also information about drinking and an increased risk of fractures, compared to non-drinkers.

I think this makes sense because people with osteoporosis are told to avoid or reduce alcohol.

Apparently it is now known that drinking three 175ml glasses of 12% wine a day increases the risk of breast cancer by more than 40% (One glass raises it by 5%).

The article ends with "so what is a girl to do?". The article ends with "A girl can't be too rich or too thin, we heard years ago, but I would add "or too sober". Hmm, but being too thin comes with medical problems".

I shall leave you to draw your own conclusions!!

On another matter, on one of the other threads, someone was asking how long after treatment finishes, can you say that you are "cured" or in the clear? It is only my view but I do not think that we can ever say that under present circumstances. We have to live with the knowledge that cancer can recur, spread or appear as another primary without warning. I have known people have recurrence after twenty years. We just have to live hoping that it will not come back.

It would be interesting to know what you are doing in the hope of keeping this nasty disease at bay. I am drinking lots of green tea, eating apricot kernels daily, eating what I think is a healthy diet, keeping active, mentally and physically, taking vitamin D (as well as calcium supplements), and above all trying to avoid stress. However, I do not think there is a magic bullet.

As for aspirin or metformin, I would not take them without medical supervision. For the moment I would not wish to take them.

What are the rest of you doing? I remember all the news about eating prunes some months ago. Are any of you doing this?

That is all for today. Best wishes.
Sylvia

mccrimmon324

Hi Sylvia,

Been lurking here but not posting.  Been very busy lately but I wanted to wish you and everyone on this thread a Happy Easter!

sylviaexmouthuk

Hello mccrimmon324 (Heather)

Thank you for your post. I was very glad to hear from you. Congratulations on the first anniversary of your BC diagnosis. Keep up the good work. I do hope you and your husband will do something special. I think somehow it helps.

I know that you must be very busy as moving home is quite a stressful event. It is even more stressful when you have to take in the health factor. My husband and I feel like a move, but we do not know where we want to go. I am quite frightened of moving away from here, because of the medical factor. I have such a good oncologist and breast cancer surgeon, who treat me with respect and I do not like the idea of going to a different hospital and having a different medical team. I do not like the idea of having a new GP or a dentist.

I know how much you wanted to move back to Pennsylvania. Before you know it you will settle down and everything will be OK. I find that moving becomes more difficult as you get older. I have moved around quite a bit, but, if I had another life, I do not think I would do it. I was born in London, went to university in the north of England, went to live and work in France, after that in Morocco, then back to England, and then to Canada for 17 years, then 9 years in the southeast of England, and finally 10 years so far in Devon (southwest England)!!! It makes me giddy to think about it. All I know is that if we do move I want to be in the southwest.

If I remember correctly, I think I remember reading that your DH is a baker. I hope he makes you at least a nice cake. Here in the UK we have a traditional Simnel cake for Easter. It is a fruit cake with a lot of marzipan running through it and covering it. I remember making one in cookery lessons aeons ago and decorating it with tiny Easter eggs.

Have you had any chocolate eggs today or hot cross buns on Friday?

Keep posting when you can, as you are an important part of this thread.

All good wishes.
Sylvia

sylviaexmouthuk

Hello bak94 (Brenda)

I was glad to know that all is well with you and that there are no signs of cancer. I was sorry to know that you are still in pain. Hang in there. You will get back to normal.

I do admire your will power in going through all this and doing your studying at the same time. What kind of qualifications will you have at the end? You seem to be doing a varied syllabus. You have gone from Jean Paul Sartre to rocks!! What are you doing in English?

I was wondering whether you know anything about whole blueberry powder. I am asking this because in icon magazine (Volume 9 Issue 4 page 28) there was a short article entitled "Blueberries can stop breast cancer tumour growth". This was according to a study by researchers at the City of Hope in Los Angeles and published in the October 2011 issue of the Journal of Nutrition.

To quote the article: "The study found that the oral intake of whole blueberry powder could reduce the growth and metastases of a very aggressive form of breast cancer (Triple negative cancer) for which there are few effective drugs."

According to the article, "Tumour size reduced by 60-75%. In addition, molecular analysis revealed that blueberry consumption altered the expression of genes that are important to metastasis. The 'dose' required of blueberries to achieve these results was equivalent to two cups of fresh blueberries a day."

That is a lot of blueberries to eat and here in the UK they are expensive. I eat some every day with other berries. Is anyone taking blueberry powder?

This volume of icon magazine is the first one of 2012.

I do hope, bak94, that you are having a good weekend.

Best wishes
Sylvia

sylviaexmouthuk

Hello youngmommy

I just wanted to say that I am thinking of you and hope that all goes well with your treatment.

Best wishes

Sylvia

linali

Hi bernie ellen sorry to hear about after effects of the rads. I also had some probs and have been attending physio for weakness and have been refered to a pain clinic by the surgeon.

Loved all the Easter posts especially the Easter bunny one.

Interesting news from the canadian research and hopefully will be of help in understanding this TNBC. 

Also must agree with you Sylvia on the connection of a severely stressfull lifestyle and illness. I am lucky to be attending stress management sessions at the support centre. I hope that they help as there is still alot of stuff in my life especially with my children!

Hope you all had a good easter. I had my own mischievious easter bunny come to stay, my grandson . He is a baby no longer and has such a strong will but has a smile that makes my heart smile.

sylviaexmouthuk

Hello linali,

I was sorry to hear that you have been having some problems and I do hope everything will resolve itself.There is nothing worse than pain. Where exactly is the pain? You can sometimes have problems with lymphoedema, sometimes minor sometimes major. It can happen after surgery,but can also come back years later.

I was glad to know you had a good Easter with your grandson.

Best Wishes,

Sylvia.

sylviaexmouthuk

Hello again linali

I was so glad to know that you are having stress management courses at your centre. I am sure it will be beneficial. If you have any tips from what you are told, please pass them on to us on the thread. I am sure we could all benefit. The very fact that we have all had a diagnosis of breast cancer is stressful for all of us. Life is never quite the same after this diagnosis. I know that I think of the Sylvia that I was before diagnosis and the one that I am now. I am not quite the same and however normal I try to be, I have fear and anxiety at the back of my mind in case I have a new primary, recurrence or spread. Unfortunately, with cancer, for the present, we cannot sit back and say we are cured.

Take care of yourself. Best wishes.

Sylvia

linali

Hi Sylvia,

The main thing that I have learned from the stress management was that it is important to get off that rollercoaster and break the circle if only for a little while. I went along expecting that I would be able to get rid of the stress but that is not the object, it's to learn how to live with it and use techniques to take time out. The facilitator uses tapes and relaxation exercises and talks us through methods in which you can visualise your stressors and place them in a beautiful hand crafted box, You put them away in a safe place for the duration of the session because worrying about them will not help and for the hour there is absolutely nothing that you can do about the problems or the people. It really works for the time that I am there and the whole group is so supportive without anyone going into detail unless they want to.

The surgeon says my pain is probably nerve damage and/or the effects of radio therapy. It's in my breast and also my arm. I have been given pain patches and medication but they dont work so well. The worst thing about the pain is the worry that it is the cancer back and I dont want to keep going to GP as he will think I'm a hypercondriac!

I rang my surgeon's secretary to ask for my correct diagnosis and to find out about mammo appt and how long waiting list is for the pain clinic. There was a mix up for my 1st yearly check and I had to chase them for my appt. The breast nurse contacted me and will send out my histology as I dont have an accurate one, she said that it must be IDC so I had that wrong. We also spoke about Brac testing and support groups etc.

Tomorrow I am starting with a new group that my psychologist has got together for" survivors". It's for 6 weeks and covers all aspects of living after treatment.

I am lucky to have all the support from group stuff as for me I feel it helps. I know that some people don't feel comfortable and prefer to go to the centre on a one to one basis but I truly feel that we help each other and it's so good to laugh. We have renamed our class Laughing Tai Chi!

I also feel that I have changed and have become fearful. I cant even seem to ask the questions I need to. For 30 years aswell as my job I was a union rep and made many speeches and negotiated with government depts and met so many diverse people from ambassadors, politicians , incredible female activists and brave, brave women from the Philippines.Now somedays I just want to stay in my house and see nobody.

This morning I must get out to do 5k as the womens mini marathon isnt far away.

I hope that you are well and thank you for your support

sylviaexmouthuk

Hello linali

Thank you for your most interesting post. It is true that we cannot get rid of stress in our lives and all that we can do is to learn how to manage it. I think we all know there is good and bad stress and that largely depends on how we deal with it. It is good to have techniques to take time out.

I did like the idea of the beautiful hand-crafted box into which you put all your stress problems. It reminds me of when I decided to have a counselling session and I was told to put everything that was bothering me into a chest of drawers, take one out and deal with that and forget the others for a time. I find that it does work. I went only for that session, which was quite long, and I did not feel the need to go again.

My husband and I also joined the Moving On group, which was designed to help people after their cancer treatment was finished. After one session, we realised that was not for us. It seemed too structured and I certainly got nothing out of it. I think I had moved far beyond it.

I was glad to know that you are finding the group session helpful. At least it is somewhere for you to go for a change of scenery and I am sure that you are of great help to the others.

I was sorry to learn that the pain that you are experiencing may be nerve damage and/or damage from radiotherapy. It is still early days for you since diagnosis, so it may all go away in time. If you have any kind of neuropathy my understanding is that it does not go away. I have it in my feet, but no one in my medical team has ever asked me about neuropathy. I went to see a podiatrist and had a test to confirm neuropathy, which I had worked out for myself. She told me it would not go away. I asked my GP and she told me the same. It is not exactly painful, just a strange stiff, numb feeling that does not bother me most of the time.

I would think that your GP should be sensitive to your fears about cancer coming back when you have pain. We all get twinges and perhaps aches where we have had surgery and radiotherapy, and if anything lasts for more than a week I would tend to get it checked out. The medical establishment is there to serve us.

I think we all have to be proactive when we are going through cancer treatment and then post treatment. Hospitals are busy places, and staff are overworked, so we need to keep an eye on things. It is easy to pick up the phone and find out about appointments.

I do hope you will get confirmation of your correct diagnosis. As I have said before, IDC is very common whatever the hormonal status.

It sounds as though the centre that you go to has become very important to you and that you are getting a lot out of it. I do hope all goes well with the "survivors" group. I would think you will cover a lot of ground in six weeks. My own opinion about living after treatment is to try to put breast cancer in the box for as often as you can, and enjoy life.

I do like the name Laughing Tai Chi of your class. Laughing is such a tonic and so good for the body.

I do feel that a diagnosis of breast cancer does take its toll on your body physically, but it also affects you psychologically and undermines your confidence. You will gradually pick up. It is a mad world out there, anyway, and I also like the peace and quiet of my own home. Society has become so noisy and often disrespectful of other people. There are too many intrusions into our privacy. I am always glad when I have been to a busy place like Exeter, to get back to the peace and quiet of my own four walls. I feel that England is now overpopulated and that quality of life has deteriorated.

I do admire your determination to prepare for the women's mini marathon.

I was wondering whether you get the BBC TV channels that we get here in England. On Tuesday evening there was a very interesting programme about the Royal Marsden Hospital in London. It is one of the best cancer hospitals in the country. It was about new treatments for cancer. One feature was about targeted radiotherapy, known as cyber knife radiotherapy. They showed it being carried out on a man who had terminal pancreatic cancer. Another feature was the use of robotic surgery. This was carried out on a man with prostate cancer, which I think was very advanced and the robot was used to remove the whole of the prostate gland without the usual side effects. He was also able to leave the hospital the same day. The third feature was about a woman, with advanced melanoma, who had been given three months to live. She was given new oral chemotherapy drugs, which shrank her tumours significantly, such that they were no longer life threatening.

It was all very interesting, but I was concerned about how much it would cost if used on a grand scale. Here in England so many drugs and treatments are refused on grounds of cost.

Thinking of you and wishing you all the best.
Sylvia

sylviaexmouthuk

Hello everyone

I do hope that all of you nice ladies are having a good week.

Best wishes
Sylvia