Calling all triple negative breast cancer patients in the UK

sylviaexmouthuk

Hello BernieEllen,

I have just read the poem aloud to my husband Raymond and we laughed so much.It is too bad that I cannot do an Irish accent as I am sure it would sound so much better!

I am quite sure that there will be a laugh a minute in your household this Christmas.Be careful with that vodka cake.

Fond thoughts,

Sylvia.

liv-

sylviaexmou bernie and all of you lovelies..

wishing you all a fantastic refreshing inspiring smiley happy loving and a wee bit of indulgence & for those who wish to partake in a huge bit of indulgence...enjoy!!

much love

liv

sylviaexmouthuk

Hello everyone

This is the latest e-mail that I have received from CANCERactive. It will probably be the last one of the year for 2012. Since it is short I thought I would post it.

Best wishes.

Sylvia

 

What an eventful year! I suppose the most significant event in 2012 for readers was that the American Cancer Society produced a report talking of an 'EXPLOSION' in research into complementary therapies since 2006 and the spokesperson referring to 'OVERWHELMING EVIDENCE' for the conclusions of the report - namely that diet and exercise could not only increase survival times but prevent a cancer returning. The National Cancer Institute in America then endorsed this report. No such joy from UK Health authorities. As if the overbearing influence of the drug companies on UK cancer charities and health authorities were not enough, we still have potentially dangerous and rather myopic sceptics trying to convince cancer patients there is no evidence to support complementary therapies in cancer! How can all this possibly help you to find good health?

In the midst of the darkness, CANCERactive has been bringing you the positive news on how you can empower yourself for nearly 10 years now. We also told you years ago that sunshine and sleep (via the hormone melatonin) could help prevent cancer, while others told you to stay out of the sun and stood against the sale of melatonin. We told you that a Rainbow Diet across the week, coupled with 'light, daily exercise' was important in both prevention and cure and that simple everyday things like aspirin, sodium bicarbonate, curcumin, green tea and resveratrol could significantly reduce metastases; that daily fish oils could reduce precancerous inflammation and polyps. All this has been confirmed in 2012. We have told you consistently that vitamin D was not only an important cancer preventer but should be included in every cancer patient's integrative treatment programme (and that vitamin K helps its action), that grape seed extract, pine bark extract and herbs astragalus, cat's claw and echinacea were important immune boosters, and all this was confirmed in 2012 by important research studies. We have stressed the need to avoid cows' dairy and sugar (glucose and high fructose corn syrup) - research shows that people with the highest blood levels of these sugars develop more cancers and survive least. We have championed Ablation or HIFU (for prostate cancer and breast cancer) - research continues to confirm this non-invasive treatment works; we have explained the benefits of Hyperbaric Oxygen therapy in reducing and even correcting radiotherapy damage (more research in 2012); and we told you all about cancer stem cells and how they have to be eradicated if cancer is to be kicked out of your body. 'Experts' have poured scorn on their existence - first mooted by embryologist John Beard in 1906. But three studies in 2012 proved their existence and role in 2012 - confirming that chemotherapy drugs were currently almost useless against them (in fact they may make matters worse), but (as always) we brought you the research on the natural compounds being shown to deal with them successfully. But then we warn you of other things too as we believe its your right to know the truth: We told you years ago that screening mammograms did more harm than good (confirmed in 2012), that rushing into prostate surgery was counter productive (confirmed in 2012), that surgery could spread cancer but there are things you can do to reduce the risk (confirmed in 2012); that EMFs from WiFi, masts and mobile phones were dangerous (EuroMPs have now passed a resolution and the WHO declared EMFs potentially carcinogenic) .... and more. Frankly, when we read that more people are surviving cancer we are pleased and excited because we know exactly why. The answer is not the usual tosh about earlier diagnosis (where? what?) and better drugs (which new drugs actually cure cancer?), but the huge public movement to 'Self-Empowerment'. Real people saying 'Enough!' and taking control of their own lives and their own treatment plan. Twenty years ago in Britain there were virtually no complementary cancer centres, no internet access, no research studies, no CANCERactive. The drug-funded charities think this counts for nothing; indeed, that your own efforts count for nothing too! But we all know differently - 2013 will be an even better year. The Integrative movement is ever stronger by the day. Gradually the truth will come out and more and more people building their own disciplined treatment plans will survive. So, as I wish you a Happy New Year, let me suggest a simple new year's resolution: SHARE THE TRUTH. It can save lives. 

Merry Christmas and a happy New Year. Chris Woollams

sylviaexmouthuk

Hello liv-

Thank you for your cheery post. We certainly need it here in Exmouth where we have non-stop rain, cloud and floods. I shall think of you on that beach and that lovely warm sun.

My husband has just informed me that there is an Exmouth in Western Australia. We learn something new every day.

Love.

Sylvia xxxx

liv-

a great & positive, encouraging post sylvia, definitely food for thought.

cheers to resveratrol, bottoms up!

sylviaexmouthuk

Seasons Greetings to everybody who views and posts.

Special greetings to Gillyone over in the US, as well as Linda in Marietta US and Luah in Canada. Our paths have crossed quite often on this forum.

Sylvia

Maria_Malta

Dearest Sylvia and all of you on this thread, wishing you season's greetings.

I've been sick with flu all week (started the last day of school....typical!) and have missed a number of delicious meals and parties.....on the positive, however, I'm sure it's the first Xmas where I've actually lost weight, rather than gained, so maybe it's a blessing in disguise? I'm pretty much recovered and need to find the energy to prepare the stuffing for tomorrow's turkey, and bake the meringue for the pavlova dessert.

Although I don't visit too often, I'd like to thank you for all your hard work keeping us up to date with the latest tnbc news, Sylvia. I hope those of you who are going through chemo or other treatment are coping well and enjoy a calm and tranquil day tomorrow, full of good things, love to all xxxxxxxxx

Sylvia, hope you haven't suffered any of the ill effects of flooding.

sylviaexmouthuk

Hello Maria_Malta

It was so nice of you to pop in to say hello and to wish us all seasons greetings.

I was so sorry to hear that you have been sick with flu and I hope you will be well for Christmas day. There is a lot of sickness going around in the UK. It is known as the norovirus or the winter vomiting disease. I have never had it and hope I shall never have it, as it is supposed to make a person feel really unwell. It has closed wards in a lot of hospitals.

I am sure you feel happy that you have lost weight, because, if I remember correctly, you wanted to lose a little weight.

I know you like to cook, so I am sure you will find the energy to prepare the stuffing for the turkey and to bake the meringue for the pavlova dessert.

I know that you are busy at work but I hope you read the thread regularly, even if you do not have the time to post. You are part of that group that went through your treatment, more or less together on this thread. BernieEllen is still very active on the thread and is a great help in keeping it going. She makes us all laugh on a regular basis and that is very important.

The three American women, bak94, mccrimmon324 and christina261 do not appear much on the forum any more, so I suppose they have decided to move on. I hope all three of them are well and happy.

I do get quite a few PMs from women from different countries and I do try to find the time to answer them. On the whole, it is better if possible to post on the thread, so that important information goes out to everybody. It is also important because everyone can share an individual's questions, problems, or worries and can give important input. As the saying goes, two heads are better than one. I know that recently on the threads women have been asking whether they should have bilateral mastectomies if they have TNBC in one breast. Women who have had this done can offer great help to those who are thinking about it. There have also been questions about chemotherapy drugs and whether it is better to have one rather than an other. There is always something going on that requires careful thought and consideration.

Tomorrow is Christmas day and everyone needs to take time out and enjoy the day in their own special way. There are many that will be beginning or continuing some form of treatment when the Christmas shut down comes to an end.

The weather has been dreadful here and more rain is on the way. I do not know whether you remember the scenic route from Exeter to Tiverton, from the time you spent here. If you do, you might remember Stoke Cannon and Cowley Bridge. The people there are flooded and I could not believe the extent of the flooding when I saw it on the local news. Thankfully we are safe where we are, but it is a miserable Christmas for many in the UK. All this on top of so much austerity and hardship. People have gone mad with the Jubilee and the Olympic Games, but with all the suffering and poverty, especially among children, I do not think we should blow our own trumpet like this. I hope next year will be better.

In the meantime, Maria, take great care of yourself and enjoy Christmas day.

Fond thoughts are coming from here to Malta.

Sylvia xxxx

sam52

Hello everyone reading these posts!

I wish you all a happy and healthy Christmas.

Sam x

FernMF

Merry Christmas to all ... thankful for another holiday season ... resting in the knowledge that I have little chance of recurrence and have done all I can do to beat BC. Trying to deal with all I've lost and trying to dwell only on the good parts of my life. This thread is a great source of information and encouragement. Thanks to you who make it so.

liv-

liv-

im from western australia  perth 39 today.

woke up to champagne and prawns, down to the beach for 3 hours, home for little sleep now getting ready to go to family and friends.. barbecue and swim in the pool and lots of great music food.

HAPPY XMAS ALL YOU LOVELIES

BernieEllen

linali

Happy Christmas to every one, happier now I have just skyped my darling little Oskar.

Peace and loving thoughts

sylviaexmouthuk

Hello FernMF

I hope you had a good Christmas day and keep up that positive attitude of yours. All you can do with breast cancer is do your best with nutrition and exercise, avoid negative stress, keep looking forward and hope for the best. It is a good attitude to concentrate on the good parts of your life. We can always find people a lot worse off than ourselves.

I do not know if you have had all the news about a little boy of seven with a brain tumour and how his case was taken to the High Court here for the judge to decide whether he should have radiotherapy against the wishes of his mother but on the advice of the medical profession. He has already had two lots of surgery and the mother is afraid of the side effects of radiotherapy and how it will affect his brain function. The parents are separated and the father was in favour of the radiotherapy. The High Court ruled in favour of the little boy having radiotherapy and he is soon to begin treatment. I felt so sad about it all.

I am sure all of us on the thread appreciate your kind comments about the thread. Do not forget that you have also made a great contribution through your comments on your experiences going through treatment. All that will have helped a lot of people.

Thinking of you. Is everyone back to work in the US today?

Sylvia xxxx

sylviaexmouthuk

Hello Liv

Thank you for your post and the weather forecast. My husband, Raymond, is one of these English men who is obsessed with the weather, so he really enjoyed looking at your map. I am sure that a lot of rain-drenched people here would love to get on a plane over to Western Australia. Remember what they say about mad dogs and Englishmen going out in the midday sun!

Here in Devon it has been a miserable Christmas for those whose homes have been flooded, and more rain is in the forecast.

I do remember what extreme heat is like. I spent three years teaching in the south of Morocco in a little place known as Ksar-es-Souk (the name has now changed). It was in the Atlas mountains. It could be 40C in the shade, but it was a dry heat. I could not stand it now.

I hope you enjoyed your barbecue yesterday.

We have neighbours who recently installed a hot tub in their garden and they seem to use it on these cold dark damp winter nights!!!

Best wishes.

Sylvia xxxx

 

sylviaexmouthuk

Hello BernieEllen

Thank you also for your weather forecast. All this is very educational, as I love looking at maps. Your temperatures are about the same as in the UK.

I have just looked up Kilkenny and Ennis and was wondering how far you are from linali. I was wondering where Mumtobe lives in Ireland. I have also looked up where Michael is in Northern Ireland.

I hope you had a good Christmas.

Thinking of you.

Sylvia xxxx

sylviaexmouthuk

Hello linali (Lindsay).

I am sure that it made your Christmas day to skype little Oskar.

I hope you had a good Christmas day. Here in the UK it is another gloomy damp day with more rain to come. It is Boxing Day here, a holiday, with the emphasis on sports, mainly horse racing, and also hunting for the “uppercrust”. We also have the Boxing Day sales, with some people queueing up all night to grab a bargain. I cannot understand this manic shopping!!!

Thinking of you.

Sylvia xxxx

sylviaexmouthuk

I have been looking back at the earlier pages of our thread, looking for information that I posted then that I thought would be of interest to anyone just discovering the thread and would save them having to go through a lot of pages. For those of you who want to start at the beginning of the thread and to read this in context, please look at page 2.

 

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

sylviaexmouthuk

This information is taken from page 2 of the thread and there is more information about chemotherapy drugs on page 6 of this thread.

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.

sylviaexmouthuk

This information is on page 8 of the thread and dates back to June 2011. Again, I thought this would be of interest to the newly diagnosed.

 

Since we have been talking about ports and chemotherapy treatment, I thought I would post a bit of information about chemotherapy for those of you who are beginning chemotherapy or are in the middle of it. Although installing ports seems to be more and more common, chemotherapy is most often given into a vein in your arm as a session of treatment. You have a cannula installed in the back of the hand into a vein, the opposite hand to the side in which you have the breast cancer. The chemotherapy drugs are contained in an intravenous drip and the drip is connected to the cannula. You need to be sitting comfortably, as it takes quite a time for the drip to distribute the chemotherapy drugs throughout the body. This can take an hour or so. Of course, chemotherapy can be before or after surgery. There is usually a rest period of about three weeks for each session, although lower doses can be repeated more often. The number of sessions varies. I think we all know the names of the drugs by now that are most commonly used. I think we all know that there are various combinations of drugs used.

There are quite a few side effects usually caused by these chemotherapy drugs, but we all vary in what side effects we have. Apparently the most serious side effect of chemotherapy is bone marrow toxicity. The bone marrow produces our different blood cells and these can all be reduced by chemotherapy. For example, chemotherapy causes a drop in white blood cells and these cells help fight off infection, so we have to be vigilant about not getting infections. Red cells carry oxygen around the body and platelets make the blood clot, so we have to be vigilant about any reduction in these. The first sign of bone marrow suppression is a fever, for which you will need antibiotics.

I clearly remember the visits of a district nurse, the day before each chemotherapy session was due to begin to take a blood test. This was sent to the lab at my hospital and was available to the chemotherapy nurses in the chemotherapy ward on my arrival. If there is anything that is not right that chemotherapy session may not go ahead. I was fortunate not to have any problems, but I do know from my reading of various threads on the forum that women are being given Neupogen or Neulasta to help keep white cell counts high enough to prevent infection. I had not heard of these back in 2005. Are any of you being given any of these?

Apparently, there are two drugs called Procrit and Aranesp which help to stimulate red blood cells and help decrease the risk of anaemia. Are any of you being given these? If you are anaemic you can feel very tired, lethargic, dizzy and breathless. I was told when going through treatment that sometimes blood transfusions are necessary. I was lucky enough not to need any, but I do remember seeing some women being given blood transfusions in the chemotherapy ward.

Other side effects of chemotherapy can be bruising or bleeding. I do remember having a few nosebleeds and apparently this is a sign of low platelets. I took a homoeopathic remedy for this and the bleeding was short lived. Another side effect is nausea and vomiting. I found that the anti-emitic drugs given during chemotherapy and for a few days afterwards worked well for me and I did not experience these. I did eat ginger-nut biscuits, drank ginger and lemon herbal tea, often with pieces of real ginger root added, and ginger capsules. Mouth problems can also occur, but I found there were special toothpastes and mouthwashes that could hold these at bay or alleviate them. They are the Biotene products. These are easily available now. The worst side effect for me was the hair loss. It is traumatic to see your hair falling out after the first chemotherapy session but you soon get used to it and get on with it. There are many other side effects but they may not affect you personally - loss of eyebrows and eyelashes, premature menopause, constipation, diarrhoea, problems with feet and nails. I am sure there are others and it would be useful if we could have posts relating your own side effects. I remember having very red palms for a very long time, and it even happens now, as does blushing of the face when I feel hot or stressed. Some women talk about chemo-brain - loss of cognitive function. My feet are still very strange, apparently peripheral neuropathy, which I am told will never go away. I certainly had a funny metallic taste in my mouth when on paclitaxel. What are your experiences during chemotherapy? The good news is most things revert to more or less normal in time.

Sylvia

 

sylviaexmouthuk

Hello everyone.

Please remember, when reading earlier pages, that some things may have moved on since then.

There seems to be a preference for installing ports, rather than using cannulas for chemotherapy. This is to help with problems with veins.

There seems also to be a move towards chemotherapy every week or every two weeks, rather than every three weeks. I get the impression that women have less severe side effects with this cycle.

I think the basic pool of chemotherapy drugs for breast cancer remain the same with perhaps more varied combinations.

I read on one thread that someone seemed to think that in the US treatment was different to that in Canada and the UK and that this was because these two countries had state financed health care, paid for through taxation but free at the point of care, as opposed to the insurance based system in the US. I do not think this is the case, for example chemotherapy drugs used for treatment in the three countries are basically the same. I think people get confused because some are using the brand names for these drugs and others are using the generic name. It gets more confusing because more than one brand name may be used for the same drug and different brand names may be used in different countries. I also think the treatment is the same in Australia and New Zealand, where they have state funded health systems.

For those newly diagnosed, do not hesitate to ask for help. Diagnosis can be a very confusing and upsetting time. There is a pool of knowledge on this thread that can guide and support you through your treatment.

It also makes interesting reading to start from page 1 and read the experiences of all those who have posted on the thread.

Best wishes to you all.

Sylvia

liv-

hello all,

Hope the folks of Devon are ok after the floods.   even here in aust we have had so many floods the last 2 years too,  devastating.

i havent worked for the last 8 months but the other night went out with my work colleagues and one that im very close to in my dept wanted to rock on to a club after our do, so off we went and had a blast...  and guess where he is from?..DEVON where you live syliva, a great chappy he is, doing so well in his work,  just purchased a beautiful home here with an enormous swimming pool and has taken to the aussie way of life.  his lovely wife still misses Devon and all her friends and family...

bernie im always checking out what part of the world everyone is from and at work  we so many irish girls and boys from all over ireland.  they do so well on the phones, aussies just love their accents and i find them so easy going and so funny.

fern so great that you are on with it and over a lot of it, well done and keep on being positive.

regards  bilateral mastectomies if they have TNBC in one breast. mostly its up to the individual and unfortunately when we are faced with bc at the beginning we tend to leave everything to the professionals until we learn from forums as this that perhaps we might have gone in another direction.

usually an overall basic summary as to what treatment is given  by your diagnosis, pathology report, that being how large tumor is, hormone receptive, node exposure etc.

for me if i had my time again i would definitely go with a double and cant understand why i was not told to.

my path report was pretty average 17/24 nodes trip neg 10cm ibc.  currently waiting for brca test to come back and if positive i will immediately ask to have other breast removed, just a hasle now as imho should have been advised to do so in the beginning.  unfortunately with bc its like another planet until you get it and usually most would have no idea in which direction to go.

as far as chemo we can only read & trust our oncs and try to go with an overall response.

for myself ive taken charge to a certain degree of what i feel is right for me as i felt my cancer needs aggressiveness and instead of me agreeing with onc it was from forums as this that made me aware that i had to be  a lot more aggressive and not just take for granted what i was being told to do.

it definitely is something that needs careful thought and consideration.

ive adapted basically a healthy daily routine, exercise at least 1 hour daily, fruit, loads of veges and take all the recommended vitamins and im sure thats why up to now ive sort of breezed through every stage of this journey.....touch wood!   you have to look after and nurture yourself but in saying that i still wont give up my social life or my drinking in moderation, to me i could be gone regardless of what i do in a blink so i say i will not allow this cancer to rule my life, if it must be part of my life, it has to try and fit in with my lifestyle.

sylvia its the same all over the world, here in australia or even india i find we rejoice over commercial pretentious things and we all blow our own trumpets when so many familys are doing it tough and many starving on the side of the road...its a crazy world.

imo silence is deady for cancer, information is gold, we need to keep conversing with each other to kick the bums ass.

keep strong.

 

 

 

sylviaexmouthuk

So, here is our weather for today.

Wet and wet!!!

As you can see, I am in the warmest part of the UK, near Plymouth, but I would not want, unlike some I know, to have a dip in the hot tub in the garden on a late winter evening.

sylviaexmouthuk

Hello everyone again.

I also read on a post on this forum, but not this thread, that when it came to looking into a family history of breast cancer, that only the mother's side of the family was of interest. I do not think this is true and I am sure that I have mentioned in the past on this thread that breast cancer can be passed on through the male side. I have read cases about this as well. I always like to check so if you are interested have a look at the following links.

http://usatoday30.usatoday.com/news/health/2007-06-19-breast-cancer-genes_N.htm

http://www.dailymail.co.uk/health/article-200612/Fathers-pass-breast-cancer-gene.html

Best wishes

Sylvia

liv-

absolutely right sylvia.  when i was interviewed for brca 1 /2  only a few months ago they were just as interested in my fathers history as my mothers and when i asked why?

was told that males can pass on the gene.

sylviaexmouthuk

Hello Liv

I do so enjoy reading your posts. It is almost as if you are bringing sunshine to this grey and damp country of mine, where we are in dire need of some sunshine.

You do sound really with it as we Brits say. Do you know which part of Devon your colleague comes from? How long has he been in Australia? I am not surprised he left this country. I do not feel there is much future here and I feel sorry for younger people setting out in life. I get the impression that Australia and New Zealand are probably the countries of choice now for people leaving this country. I spent seventeen years in Canada, but always felt a bit homesick and never quite at home, even though there was a lot I admired about Canada and Canadians. It was always the women among the expatriates who felt more homesick for family and country. I do not know why it should be but I found Americans and Canadians much more outspoken than Brits. There seems to be too much reserve in the British psyche and a tendency to moan but not take action. There is always talk here of the “blitz” mentality, but I think that has gradually died out with the passing of the war-time generation.

I am sorry to say that I do not know many Australians or New Zealanders, but those I have come across do seem outspoken and I admire that. I am not afraid to speak up for rights and justice.

It is strange how different accents appeal to us. We certainly have a range of them in the UK from the Scottish and Welsh to the Geordie and Liverpudlian. There is a big difference between the north and south here and within those. There is a strong Devonian accent.

As you say, bi-lateral mastectomy is an individual choice, but a difficult one to make. I would always prefer a mastectomy over a lumpectomy, but whether with a diagnosis of invasive ductal carcinoma with TN receptors I would have opted to have the remaining good breast removed prophylactically would have been too difficult a choice for me. I do know someone who has had both breasts removed prophylactically although she has never had any sign of breast cancer, but I think her sister died from it.

I do hope your BRCA test will come back negative, as that will be something less for you to worry about. You are dead right about all of us taking charge of our breast cancer and doing what we think is the best for us.

I am so glad that there is so much more information available now for newly diagnosed people compared to when I was diagnosed seven and a half years ago.

I agree with you. We are living in a crazy world.

I shall be glad to see the back of 2012, especially in the UK. I am so fed up with all the coverage and boasting about the Olympics and the Diamond Jubilee. I have read articles in the paper about how we are the greatest country in the world, based on these things. I believe a country should be judged by how we treat our most disadvantaged and our frail and elderly. In that respect we cannot do much boasting. I think the role of government is to look after the people of a country and to aim for the greatest happiness and well-being of the greatest number of people. We have a long way to go, babe! Could do better!!!

Please send some of your sun's rays here.

Sylvia xxxx

FernMF

Paternal influence on breast cancer is interesting to me . . . of course, in my family tree, we know nothing about my father's family history, medical or otherwise . . . I am BRCA negative . . .

My sister, 14 years younger than I, is at the doctor's office TODAY (on an every 6 month mammogram schedule) - and an ultrasound was ordered . . . She seems to think it's an abundance of caution . . . but I am a bit NERVOUS for her . . . it's one thing to own the diagnosis, surgery, chemotherapy and "cure" . . I've settled into that now (7 months later) . . . but it's a totally different thing when it's a family member . . . .

I am a legal secretary - and have no "paid-time-off" left for the year because of the 6 weeks PTO used during surgery recovery and chemo.  YES, Sylvia, I am working this 3-day work week.  I am SO grateful for a generous employer who provides fabulous health insurance and fair PTO.

The weather in WV is cold and rainy today with some "promise" of snow tonight and tomorrow . . . we never get much (it's scary, nonetheless because WV has its fair-share of inept drivers in inclement weather).  We had a bit of ice last Friday, on the drive home from work, as well.  That was a wee-bit scary! 

I too enjoy the weather maps - of course we americans use the farenheit thermometer - so seeing these single digits puts a chill through me.

liv-

Hello everyone ((hugs))

 

 

a bi-lateral mastectomy is definitely an individual choice but for me it doesnt daunt me at all and only wished they had pushed me to have one, as i understand now that im a high risk.  not scared of reconstruction as only had implants put in january this year, quite partial to cosmetic surgery.... ibc does not normally show up in mammogram as it it can be in sheets so having the implants probably saved my life up till now.

as ive had radiation have been told by breast surgeon that implants are not an option for me and ive thought about it and are going to try implants regardless, worst scenario they go hard and have to have them removed.  so wont be having reconstruction done in public system will go private.

and regardless of genetic results im going to have the non cancer breast removed.  obviously for my life's sake but also esthetically, that being they are the same...hoping we can keep the nipple of good one.

im also covered privately and the reconstruction will not be classified as cosmetic so hopefully there will be no out of pocket expense.

just recently found out there is new way to reconstruct with expanders.

__ Quote ___ surgeons have been using Saline filled Tissue Expanders to expand the submuscular pocket following a mastectomy to create the space to ultimately insert a permanent prosthesis. This involves placing the expander under the pectoralis major muscle; which lies under the breast; at the time of the mastectomy. The Tissue expander is initially partially inflated and then the patient comes to the surgeon’s office and has 60mls of saline injected into the expander until the suitable pocket size is created to allow for the ultimate prosthesis to be placed. This injection process currently occurs a number of times and takes between 3-4 months and then the patient has a second operation to remove the expander and the prosthesis is inserted. Recently a new type of expander called an Airxpander has been developed and is currently undergoing a clinical trial at the Mount Hospital, for 40 patients. The Airxpander has a carbon dioxide (CO2) cylinder and a receiver unit inside its central chamber; the patient uses a hand-held remote control to inflate the expander with a maximum of 10mls of CO2, up to three times per day to create the correct pocket size. This process requires no injections at the surgeon’s office, the patient inflates the expander at home and at their own level of comfort and the infection rate is much lower. The average time to completion of expansion in the current trial is 15 days. The Airxpander is currently undergoing a similar trial in the US and it is expected to be widely available for surgeons to use in a few months time.

me too sylvia are so glad that there is so much more information available now and with forums as this are so much better off.

sylvia it not only in the UK its the same everywhere . I too believe a country should be judged by how we treat our most disadvantaged and our frail and elderly and what i believe in is.

Democtratic Socialist - jesus christ was the first great democratic socialist..he also believed ... 'governments' have the responsibility to protect and nurture all members of society.

i also belive jesus christ is now the most exploited human being ever to have been...im an athiest.

now today is a humid 38degrees and im off to the beach to do my daily walk, given the park a miss as too hot during the day.  ive upped the ante and rejoined my gym and am trying to strengthen my bones so after walk down the beach will do a bit of weights.

not near as strong as before but baby steps is ok for now and hopefully they will turn into teenage then going for gold, adult.

wishing you all well.

 

liv-

Australia weather forecast For Friday

Now Fri Sat Sun Mon

Adelaide  13   29  Alice Springs  20   39  Brisbane  22   30  Broome  29   37  Cairns  24   33  Canberra  11   31  Darwin  25   34  Hobart  13   20  Melbourne  14   22  Perth  24   41  Sydney  18   24	National Summary Troughs over QLD and northern NSW are causing potentially severe thunderstorms. A ridge is clearing the nation's southeastern. Hot easterlies are affecting central and western Australia. A trough is causing isolated showers and the odd storm in WA and the NT Top End. New Year's heat for Adelaide Southerly spoils Sydney's beach weather Gusty thunderstorms in the Kimberley
	States: New South Wales Northern Territory Queensland South Australia Tasmania Victoria Western Australia

Forecast    Current Conditions    Synoptic Chart    Satellite    Radar

Forecasts for Friday
	Forecast	Min./Max.	Chance of Rain, Likely Amount	Frost Risk	UV	9am		3pm
						Wind	RH	Wind	RH
Adelaide	Mostly sunny	13 / 29°C	20%, < 1mm	Nil	Extreme	S 16km/h	57%	S 27km/h	37%
Alice Springs	Windy	20 / 39°C	5%, < 1mm	Nil	Extreme	ESE 27km/h	15%	SE 26km/h	13%
Brisbane	Possible shower	22 / 30°C	70%, 1-5mm	Nil	Extreme	NNW 9km/h	67%	E 23km/h	68%
Broome	Possible thunderstorm	29 / 37°C	30%, < 1mm	Nil	Extreme	W 12km/h	63%	W 19km/h	59%
Cairns	Mostly sunny	24 / 33°C	30%, 1-5mm	Nil	Extreme	SE 18km/h	66%	SE 27km/h	61%
Canberra	Mostly sunny	11 / 31°C	40%, 1-5mm	Nil	Extreme	NE 6km/h	67%	WSW 17km/h	23%
Darwin	Thunderstorms	25 / 34°C	90%, 10-20mm	Nil	Extreme	WNW 9km/h	76%	WNW 16km/h	67%
Hobart	Clearing shower	13 / 20°C	30%, < 1mm	Nil	Extreme	NW 26km/h	64%	SW 35km/h	46%
Melbourne	Clearing shower	14 / 22°C	30%, < 1mm	Nil	Extreme	W 25km/h	70%	SW 26km/h	59%
Perth	Mostly sunny	24 / 41°C	30%, < 1mm	Nil	Extreme	ESE 14km/h	45%	SSW 14km/h	28%
Sydney	Mostly sunny	18 / 24°C	10%, < 1mm	Nil	Extreme	SSE 18km/h	62%	SE 24km/h	59%