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Calling all triple negative breast cancer patients in the UK

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Comments

  • maryna8
    maryna8 Member Posts: 1,832

    Carolben, sounds like you had a wonderful visit with family, and sounds like you have a large famly!  So nice to know that support and love is there, even if at a distance!

    I know a lady here who has mets on her lungs...she is doing very well with Avastin pills.  I don't know if that is similar to the Zeloda.  She is prepared to take it or something like it for the rest of her life, and it works well for her.

    Sounds like you had a nasty 24-hour bug, the only good thing is these bugs are quickly gone, with only the after-effects to deal with.  But not nice when you are already having trouble eating!

    I will know more Wednesday about my  situation, but one source has told me they are thinking of leaving off the Taxol completely.  Another thought they might stick it onto the end in weekly treatments.  I do know I would not want another go-around like my first one.

    Hoping you are feeling stronger!  Mary

  • chatterbox2012
    chatterbox2012 Member Posts: 270

    Hi Sylvia

    I am staying up to date with the messages. I am in Ibiza for a few days, I was here a few weeks after Janette died, I felt I needed a holiday then but it is nice to see it in a less distressed light. Ibiza town is lovely and the weather is good. It has been misty on the coast until evening but move two streets away from the  sea and it is bright sunshine.

    Best wishes to everyone.

    Michael

  • shorfi
    shorfi Member Posts: 437


    Wednesday is my exchange surgery and I am so ready. Will check in with everybody when I can Smile

  • maryna8
    maryna8 Member Posts: 1,832

    Shorfi, best of luck for today.....it must be nice to have something like that to look forward to after all that you have been through!  

    Let us know how it goes; best wishes, Mary

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Michael,

    It was nice to hear from you and I hope you have a nice break in Ibiza. At least you will get some sun.

    I was glad to know that you are keeping up to date with the posts.

    Things are quiet at the moment and we could do with some more posts.

    Do you have any new information about TNBC?

    Fond thoughts,

    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello shorfi,

    I am just popping in to say that I hope all went well today. Let us know how you are.

    Thinking of you,

    Sylvia.xxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Mary,

    I was wondering how you got on with your oncologist today. I do hope all went well.

    I am thinking of you and wishing you all the very best.

    Fond thoughts,

    Sylvia.xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Peter  & LIz,

    I do miss your posts and would love to know how both of you are doing. Remember you can say anything you like.

    I am thinking of you both.

    Fond thoughts,

    Sylvia.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Gill,

    How did your check up go today?

    You are in my thoughts,

    Sylvia.xxxx

  • Jackpot
    Jackpot Member Posts: 141

    hi Sylvia 

    I went for my three month check up today, I didn't get to see my usual oncologist and the doctor I saw didn't have a clue why I was there and I had to tell him it was just a check up...finally he examined me and asked me what the scars where on the right side were I had the reduction..Seriously how could he not know that? it's in my files, then he told me he'd see me in six months even though I was told id be seen every three months for the first year.....he didn't know I was triple negative....needless to say I didn't have much confidence in him by this point 

    I got a GP referral to the gym last week and started on Tuesday it's only £1 for all the classes and swimming is free and that's for three months and when it runs out I can renew it...I can only go when the doctor is on site which is three days a week but still a great deal 

    Fast shampoo is a shampoo and conditioner I got from boots that makes your hair grow quicker, I read the reviews and there was lots of good things said about it so I got some, I can't believe how fast my hair has grew and would recommend it to anyone, I've actually got it spiked up right now in a bit of a punk look while some of the other girls who finished chemo at the same time as me are still wearing their wigs

    I'm glad your still enjoying an idiot abroad I think it only went to three series but he brought out a similar programme called "the moaning of life" I think there was five episodes which were really good as well if you see them on anywhere there well worth a watch 

    I've bought a new book called the natural cancer handbook have you ever read it? Theres everything in it and explains it all in detail...I can't put it down, it was a bit expensive at £20 but well worth it 

    I hope everyone going through treatment is doing ok 

    Take care

    Gill

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943


    Hello Jackpot (Gill)

    Thank you for popping
    in. It does not look to me as though things were handled properly at
    your first check up and that is not good. For the check ups I have
    always seen my own oncologist over nearly nine years and she always
    has my records with her. When I first started with the check ups
    every three months, I alternated with my oncologist and my breast
    cancer consultant surgeon. I saw my breast cancer consultant for the
    first couple of years and then her clinical assistant. They always
    had my records in front of them.

    Please do not be put
    off over this first check up. Write to your oncologist and find out
    about your next appointment. I know there may be differences with
    different hospitals, but I thought the routine was every three months
    for the first few years and then every six months. Often, I think a
    patient is discharged after five years, that is what has happened
    with some friends with hormonal breast cancer, but with TNBC it may
    be longer. I have been seeing just the oncologist for the past two
    years and was discharged from the breast cancer consultant. My
    oncologist told me that I shall be discharged after ten years if all
    continues to go well. That means I have just two more check ups.

    It is important that
    you have confidence in the person conducting these check ups, so do
    not leave anything to chance.

    I hope you enjoy your
    time at the gym.

    I was intrigued about
    Fast shampoo and I shall certainly check it out. It could be so
    useful for patients after chemotherapy. I wonder what is in it.

    I was interested in
    what you said about An Idiot Abroad. I do have a great laugh and was
    in tears when I saw the one about Route 66 in the US. I had seen
    Billy Connolly doing Route 66 on a three wheel motorcycle. I shall
    certainly look out for The Moaning of Life. I love that title! I do
    like Karl Pilkington and find there is a lot of depth in what he
    says.

    I was most interested
    to know about the book The Natural Cancer Handbook. I have not read
    it but have looked it up on Amazon, found it most interesting and
    have ordered a copy. It is a book that is right up my street. I know
    I shall read it cover to cover. On one of the pages I looked at I was
    concerned to read that misdiagnosis with breast cancer is 44%. That
    is huge. It is important to get second opinions and check for blood
    markers in the blood. There was a woman in the neighbourhood who
    apparently went through cancer treatment, only to be told she had
    never had it!!

    Keep in touch.

    Fond thoughts.

    Sylvia xxxx

  • Jackpot
    Jackpot Member Posts: 141

    hi Sylvia

    I thought you might like the book I suggested and thought of you when I started reading it that it was a book you would take a great deal of interest in, I  have already found a lot of information from it and think it is a book that I will be dipping in and out of for a long time for information 

    I'm really enjoying the going to the gym right now, I go in for around an hour then go into the pool for an hour to an hour and a half I've managed to get my diet back on track this past couple of weeks and have already lost about 5 pounds,

    I bought a nutribullet...have you heard of them it's like a juicer and blender combined turning fruit and veg into a drink with no waste, it  liquidizes the whole fruit including the skin pips everything that a normal juicer wastes and apparently the most nutritious part of most fruits and best of all there's no mess to clean like a normal juicer....a really easy way to get a lot of fruit and veg into your diet you just add water or other liquid before you blend to make it drinkable 

    Regarding fast shampoo I think it's biotin that's the secret ingredient in it but I'm only guessing really, all I know is that it works and would recommend to anyone who has just finished chemo who wants their hair back just that little bit quicker

    I've got a follow up with my surgeon on May 14th so I will wait till then to share any concerns I have about my first check up and hopefully I can be reassured then, I'm not too worried because I'm feeling pretty good right now 

    I hope everyone has a lovely day 

    Take care

    Gill

  • adagio
    adagio Member Posts: 713

    jackpot - glad you are feeling so well and a getting the exercise in. I think that excuse helps considerably and it makes me feel so much better when I do it.  Those bullets are amazing little machines - yeah for healthy eating!!

  • Jackpot
    Jackpot Member Posts: 141

    hi adagio

    Thanx, it's quite amazing just how good exercise makes you feel isn't it....combined with my little bullet I'll have my waistline back to where it should be in no time

    How's the arm now since your fall? Hope it's getting better

    Take care

    Gill 

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943


    Hello Jackpot (Gill)

    It was nice to hear from you. I am
    eagerly awaiting delivery of this book and I am looking forward to
    talking about it with you. I am sure it is going to be a very good
    reference book. I do read a lot but I usually donate finished books
    to Cancer Research, but I do keep some reference books. You might be
    interested in a couple of books that I discovered in The Discount
    Book Shop at bargain prices, even though they are right up to date.
    One is The World's Best Kept Health Secrets by Readers Digest. The
    other one is Disease Free, Proven Ways to Prevent more than 90 common
    health conditions, also by Readers Digest. I keep reading bits of
    them and picked up on one thing about breast cancer in the Disease
    Free book. It says that you can reduce by 60% your risk of breast
    cancer if you exercise regularly.

    I was so glad to know that you are
    enjoying your time at the gym and I want to say congratulations on
    already losing five pounds. I can see that you are very determined to
    do your bit to keep well.

    I was very interested to know about the
    Nutribullet. I did have a juicer before I was diagnosed with breast
    cancer, but I had stopped using it because I got fed up with all the
    cleaning up that was needed and the fact that it took out all the
    fibre. If there is no waste with the Nutribullet it can only be good.
    It is true that the skin and pips are very important. I am always for
    grapes with the seeds in them like we used to have years ago, but
    without success. The Nutribullet sounds like a good way of getting a
    lot of nutrients. We are now told that we need more than our five a
    day, and should aim for at least seven. In Japan I think they have
    thirteen a day! I think I shall be looking into this machine.

    I was interested to know that the
    secret ingredient in that Fast shampoo is biotin. The B vitamins are
    very important. As you say, this shampoo sounds very useful to help
    hair growth for those wanting to get their hair growth back more
    quickly. Talking about hair, I was wondering how many breast cancer
    patients now opt for the ice cap to avoid hair loss. Since losing
    your hair during cancer treatment is so traumatic I would think a lot
    of women might be opting for this ice cap.

    I do hope all will go well on May 14th
    when you see your breast cancer surgeon. I hope you have a better
    experience. I would think during the period of check ups that
    alternate the oncologist and the breast cancer surgeon liaise in what
    is going on.

    You do seem to be doing everything
    right to get your life back on track.

    I seem to remember you have a holiday
    planned in Turkey. When is that?

    I watched the summarising final episode
    of series 2 of An Idiot Abroad. It was very interesting and funny,
    especially the part with Karl Pilkington demonstrating his invention,
    a kind of seat attached to his trousers. What do you think of his two
    colleagues? Ricky has a hearty laugh, which is contagious.

    I do hope all is well with your family.

    Have you kept in touch with any other
    patients that you met during your treatment?

    Have a good weekend and keep in touch.

    Fond thoughts.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943


    Hello everyone

    I hope you are all well and enjoying
    the lighter, longer days and especially the mild weather. The gardens
    here have really sprung to life and are a joy to look at.

    I hope all is well, adagio, over there
    in Canada and that your arm is slowly healing.

    Have a good weekend everyone.

    Thinking of you all.

    Sylvia

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943


    Hello maryna8

    I am just popping in to say that I hope
    everything went well with your second chemotherapy on April 8th.
    I do hope you are not feeling too unwell.

    Hello shorfi, I do hope everything went
    well with your reconstruction on April 9th.

    I hope the two of you will let us know
    how you are getting on.

    Fond thoughts.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943


    Hello everyone

    I have just found a
    very good website about parathyroid disease. Those who have read my
    thread for a long time will know that I was diagnosed with
    hyperparathyroidism (an over active parathyroid gland) at the same
    time that I was diagnosed with breast cancer. My oncologist
    discovered this through doing a test for PTH because I had high
    calcium levels and she was concerned that my cancer may have spread
    to the bones. It turned out I had hyperparathyroidism which leaches
    calcium out of the bones into the blood and causes osteoporosis. I
    was told that by the size of the adenoma on one of my parathyroids
    that this had preceded the breast cancer and that I had probably had
    it for a long time. In 2009 I had a parathyroidectomy to remove the
    adenoma, the calcium level normalised and I was told I was cured.

    I had read research
    that believes that there is a connection between hyperparathyroidism
    and breast cancer. Now on other threads I am reading posts about a
    connection between thyroid problems and breast cancer.

    The website that I have
    found is as follows.

    http://www.parathyroid-gland.com/

    I would welcome any
    comments. There are two other forums in which this disease comes
    under discussion.

    IDC (Invasive ductal
    carcinoma)

    Thread: Parathyroid
    disease and breast cancer.


    Not diagnosed with a
    recurrence or metastases but concerned

    Thread : High blood
    calcium levels.

    Thinking of you all.

    Sylvia

  • sam52
    sam52 Member Posts: 431

    Hello Sylvia

    Thank you for your post.Term finally finished last week... a 15 week term -unheard of!

    It is such a coincidence that you just posted about parathyroid disease as I saw my rheumatologist last week and he has suggested I have another DEXA scan. I am sure the osteoporosis will not have improved, so I am ambivalent about it.

    The website you mention in your post above is interesting - and was written by one of Dr Norman's patients.He is the author of the very informative website www.parathyroid.com and was the basis of my quest for minimally invasive surgery when I had hyperparathyroid disease .Like you, I am convinced there is a correlation between hyperparthyroidism and breast cancer.

    It was a beautiful day in London today and I was able to get on with seed-sowing for my allotment. I think this is my favourite time of the year in the garden, as all the trees start coming into leaf , although there is always a lot of work with hedges and lawns to be cut.

    Will you be having a restful Easter? I will be visiting my father and there will be six of us there on Easter Monday.

    With love,

    Sam x

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943


    Hello sam52

    I was so pleased to
    hear from you as I have been wondering how things are going with you.

    I can imagine how hard
    that fifteen week term must have been for you and I do hope you will
    have a good break.

    It is indeed a
    coincidence that I should have posted about parathyroid disease when
    you have just seen your rheumatologist. I do not know what to say
    about your having another DEXA scan, but let me know what you decide.
    I tend to agree that osteoporosis will not show much improvement. I
    also have doubts about the way the state of our bones is measured by
    a DEXA scan. I do not know whether you saw my post when I said that I
    had just read the April edition of the magazine What Doctors Don't
    Tell You and it had on the cover Reversing Osteoporosis. There was a
    long and detailed article inside all about osteoporosis and I am sure
    you would find it interesting. The second part of the article will be
    in the May edition, it will be out on April 27th. The
    article does not have much confidence in these DEXA scans, nor in the
    numbers used to diagnose osteoporosis. Apparently the DEXA scans are
    not very accurate. It points out that bone mass does not necessarily
    have anything to do with bone strength. It also says some drugs can
    increase bone mass by 5% but because the actual bone structure has
    been damaged it is not made stronger by the drugs.

    You can get copies of
    this magazine in WH Smith and I would be interested to exchange views
    with you on the article. The April edition is still in store.

    The article examines
    six myths about osteoporosis. There is also a section How I Beat
    Osteoporosis.

    What concerned me
    reading this article is that the numbers for a diagnosis of
    osteoporosis are being changed in order to put more and more people
    on drugs such as bisphosphonates and another lethal drug, strontium
    ranelate, which has nothing to do with the natural strontium that I
    am taking..

    I also found the
    website that I posted very interesting and very easy to understand. I
    think that Dr Norman knows what he is doing and saying and I think it
    is very useful to have input from one of his patients. I was very
    concerned reading about all the risks of having full surgery for a
    parathyroidectomy. I am so glad that my breast cancer consultant and
    endocrinologist knew what she was doing and that I was alright. I do
    hope that now, five years on, only minimal invasive surgery is being
    done.

    I do think that
    everyone who goes for a normal full blood test and is told they have
    high calcium blood serum should get that checked out by having a
    parathyroid hormone blood test to see if they have high PTH. A person
    does not want to be walking around with hyperparathyroidism with no
    symptoms and running all kinds of risks with their health, such as
    pancreatitis, kidney problems and of course osteoporosis.

    As far as the DEXA scan
    is concerned, I think it is useful to have one before and after
    cancer treatment, to find out if you have developed osteoporosis or
    osteopenia due to your treatment. I still think my treatment may have
    played a part, because I had no height loss until after my breast
    cancer treatment.

    What do you think about
    thyroid problems and development of breast cancer? I can see there
    could be a problem. I think we do not know enough about what
    malfunctioning hormones do to our body and the role they play in
    chronic disease. I often wonder how long I had had
    hyperparathyroidism before my oncologist diagnosed it in 2005. All I
    know is the endocrinologist told me it definitely preceded the breast
    cancer.

    It is good that we are
    having some nice weather and I am glad that you were able to get on
    with some work on your allotment. It is a lovely time of year as
    nature comes back to life. I did three hours of gardening work in the
    grounds yesterday.

    We shall be at home for
    Easter and trying to take things quietly. The seafront in Exmouth is
    going mad at the moment with the sunshine.

    I do hope you have a
    good time with your family. It sounds as though you are going to have
    a nice family gathering.

    Please keep in touch.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello sam52 again,

    I forgot to say that a friend of mine had trouble with a wisdom tooth and had to have it removed at the hospital. It transpires that she has that necrosis of the jaw caused by bisphosophonates, namely Fosamax. Her GP left her on them for seven years. She has been on very strong antibiotics. When she returns to the hospital she may have to have bone removed from the jaw.

    I am so glad that I have repeatedly refused to have anything to do with bisphosphonates.

    I see that in October you will have reached thirteen years since your breast cancer diagnosis. Do you still worry about it coming back. It still lurks in the back of my mind.

    Happy Easter,

    Love, Sylvia xxxx.

     

  • chatterbox2012
    chatterbox2012 Member Posts: 270

    Hi Sylvia

    I had a lovely time in Ibiza, the weather was perfect.

    I have been trying to upload the new website I have constructed but for some reason it just will not display. I have lots of news and research stories about TNBC that I was keeping for the website but I guess I could just post the links here; Do you think that would be useful?

    I was reading about "Fast Shampoo" and wanted to stick my oar in from a former hairdresser perspective. Hair is dead. There is nothing you can put on your hair that will make it grow faster. You can make it appear nicer for a short while by applying products such as conditioner which coat he hair. The condition of ones hair comes from ones general internal health. the only things that will stimulate hair growth are heat and massage of the scalp so as to increase blood flow.

    Michael

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943


    Hello Michael

    Thank you for your post
    and I was glad to know that you had a lovely time in Ibiza and that
    the weather was perfect.

    You are most welcome to
    pass on news and research stories about TNBC on this thread, as we
    are all trying to keep up to date. Please post the links here and I
    do hope that you will find a way of displaying them on your website
    as well. It definitely would be most useful. We do need to know
    whether there have been any big discoveries about TNBC and whether
    there any different drugs in the near future that will be available
    to patients.

    Thank you for your
    professional advice about hair. I have also been reading about FAST
    Shampoo. It was not available in Boots in Exmouth, but there was
    information about it online. The comments from people who had used it
    were most interesting. Some loved it but others thought it damaged
    their hair. I could not believe the price at £30 for a bottle of the
    shampoo and separate conditioner. The magic ingredient seems to be
    biotin, which I believe belongs to the B group of vitamins.

    I do agree with you
    that the condition of your hair comes from general internal health
    and I think the way to that is through good nutrition. I think that
    applies to skin and nails as well.

    What you say about
    stimulating hair growth through heat and massage of the scalp to
    increase blood flow makes sense. I suppose that means that the Indian
    head massage must be good. I know they do offer that as one of the
    complementary treatments at some of the cancer charities. I am not
    into things like that but when I was going through treatment,
    Raymond, as my carer, had an Indian head massage (he has never been
    quite the same since LOL). What kind of heat treatment would you do?

    I do hope you are well
    and in good spirits.

    Fond thoughts.

    Sylvia

  • chatterbox2012
    chatterbox2012 Member Posts: 270

    Hi

    I will look through the articles I have been saving and post any that I think are important. 

    When I mentioned heat in relation to hair growth I was thinking of the sun and warm weather. Hair grows faster in the summer. I can certainly recommend one thing that will make hair, skin and nails fantastic and that is brewers yeast tablets. Don't buy anything with a fancy name, just straight brewers yeast, they are dirt cheap and you can take as many as you like.

    I am afraid there is a lot of psychology involved in hair. If any famous hairdresser cut your hair and charged £10 most people would think it a pretty average haircut but if you paid £110 people would think it a work of art. The same applies to hair products. I doubt if the addition of biotin (whatever that may be) adds more than a few pence to the cost of making a shampoo but no company is going to convince people that their hair is growing faster if they charge £1.99 for the shampoo.

    Michael

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943


    Hello sam52

    I just wanted to say
    that since we have got back on the subject of hyperparathyroidism,
    and a connection with breast cancer, and since I read a post in which
    someone said that her oncologist had told her there was a connection
    between thyroidism and breast cancer, I have been doing a bit of
    research (as is my nature)! I found out a few interesting things. I
    have read that women with hypothyroidism should be at a lower risk of
    breast cancer, but that women with hyperthyroidism are at a higher
    risk. I felt concern about this as one of my nieces was diagnosed
    with hyperthyroidism when she was in her teens. The strange thing is
    that although women with hypothyroidism should be at a lower risk,
    they have discovered that women with breast cancer are more likely to
    have hypothyroidism than other women. This appears to be perhaps
    connected to their cancer treatment. Some of the articles I have read
    get a bit complicated and one says there is no evidence that this
    association between breast cancer and thyroid disease is cause and
    effect and it makes better sense to think that the thyroid disorders
    associated with breast cancer and the cancer itself are related to a
    common predisposing factor. Does this sound familiar? I am sure you
    will remember from the first article we read about
    hyperparathyroidism that it said that one may not be causing the
    other and there might be a predisposing factor for both, such as
    x-rays in childhood.

    What amazes me in all
    of this is all the problems caused by malfunctioning hormones.

    So far I have not read
    anything about thyroid problems etc. and a connection between
    receptor status in breast cancer.

    Hoping to hear from
    you.

    Love.

    Sylvia xxxx

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943


    Hello Michael

    I shall look forward to
    reading some of the articles.

    I was very interested
    in what you had to say about hair growth and how sun and warm weather
    is good for hair growth.

    It is strange that you
    mentioned brewers yeast tablets and how good they are for hair, skin
    and nails. Raymond and I used to have either the tablets or the
    de-bittered brewers yeast powder for many years. I think we may go
    back on them, either powder or tablets. They are, of course, B
    vitamins.

    I do agree with you
    about the hairdresser and charges. For example, I do not think much
    of David Cameron's hair cut for which he pays a fortune and yet the
    haircut is very average. In fact, one of my brothers who has a lovely
    crop of curly hair, got himself photographed in the local paper and
    criticised the cost of David Cameron's hair cut. He said he went to
    one of our local hairdressers and got his cut and blow dried for
    about £10 and that included a cup of coffee.

    I do agree that women
    in particular are being exploited over the cost of hair products and
    that they are paying for the brand.

    The latest fad in
    shampoos seems to be the benefit of caffeine in the shampoo. I was
    reading one such shampoo which was saying that the caffeine was
    beneficial for post-menopausal women because it balanced out the
    oestrogen and progesterone and counter-acted the progesterone
    dominance that took place in women after the menopause. Any
    comments??

    That is about all for
    now.

    Best wishes.

    Sylvia

  • chatterbox2012
    chatterbox2012 Member Posts: 270

    Hi Sylvia

    I am not sure if caffine would b of benefit but I doubt if it does any good applying it to the hair or scalp.

    Here are a few articles for today:

    http://www.wearecentralpa.com/story/d/story/new-op...

    http://medicalxpress.com/news/2014-04-highlights-d...

    http://medicalxpress.com/news/2014-04-tumor-suppre...

    Michael

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,943

    Hello Michael

    Thank you for all your work with posting the links. I shall try to get through them in the next few days.

    I hope others on the thread will appreciate your efforts, read the links and post their comments.

    I was concerned to see the following headline in the Good Health section of the Daily Mail on Tuesday April 15th. The heading of the article was "Scandal of life-saving NHS cancer machines lying idle" by Rachel Ellis. Above the title was "New high-tech radiotherapy can kill cancer more effectively, so why are patients being denied it?" I shall post more about this latter.

    I also recently read that medical induced illness was the third leading cause of death in the US, after heart disease and cancer. I would not be at all surprised that it is the same in the UK.

    This thread is not very active at the moment and there are no newly diagnosed patients posting and I would like to think that is good news, but I wonder whether there is so much information around now that people are not posting.

    Best wishes.

    Sylvia

  • Normandee
    Normandee Member Posts: 43

    Hi Sylvia

    It has been a long while since I posted but thought I would just let you know I had my 6 month check up this week and my Breast Surgeon was very pleased with me and said everything was fine and I had healed exceptionally well.  Very thorough physical examination of remaining breast and also rigorous searching for any enlarged lymph glands both sides, collarbone, neck. No blood tests but I have had these in the past. Just thought I would post!

    Don't know if it's just me, probably not, but I get really worked up and nervous before these checkups and I am quite irritable to live with (poor Bernie!). 

    Something may be of interest - My BS (who is Clinical Director of Breast Surgery at the hospital) has asked if I would be willing to be a case study for a Thesis she is writing.  I have asked for the removal of my healthy breast, and have never changed in this desire having asked for this outcome at my very first appointment with her. As I am not BRAC carrier this is not an easy thing for her to perform and needs justification to Health Authority, with reasons why.  To this end her Thesis is on why a substantial minority of women seek bi- lateral MX (who do not carry the BC gene) over breast conservation and reconstruction. It would appear she is happy to go ahead with my prophylactic MX at the end of this case study. Will let you know if I discover anything interesting in the months ahead.

    Good luck to everyone going through treatment - I am keeping up to date with all the posts. Happy Easter Sylvia and to everyone else,

    Love Norma