Calling all triple negative breast cancer patients in the UK
Comments
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Hello again Dulcie,
I was just thinking that you could get a second opinion about everything. The Royal Marsden in London is supposed to be the best hospital in this country for cancer treatment. You could write and explain about your metaplastic breast cancer.
With fond thoughts,
Sylvia.
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Thank you Sylvia for your ...always informative posting! I will do that with the Royal Marsden..i wonder if they have an email address?
I'm sorry if i mislead you..i had the drain out 2 days after surgery ..then sent home to an empty house..it is 14 days today since op.. i am now a little concerened about these scans ..as my doctor keeps going on about the radiation..and both of us have now had 1 CT scan each and it looks like we may both be having more! My OH had a CT scan and it was just the neck and chest..even though he has had a headache for 3 months now..before the cough started..they have found nodules in his thyroid and 'numerous' in his lungs..they are testing his bloods for Bince Jones..sorry might have that first part slightly wrong...he has had cameras up and down..we do not have those results in yet! We are seeing a 'bowel' specialist tomorrow..then my surgeon Friday..after that ..next week a lung specialist and a thyroid specialist for a biopsy on his thyroid..he has already had some biopsies...he has been fast tracked this week ...so i hope things are now moving for him!
He has only just been given some iron tablets..and 2 inhalers for his cough and another tablet for phyloria (sp) bacteria? Goodness he could have been given the first 2 ages ago to ease his constant coughing and bring his iron levels back up...
I am sorry but in some areas ...i think age plays a large part in treatments..i feel that i am treated somewhat very 'casually' and i am seen as very outspoken which is of course is not liked by most medical people..but i shall continue to be true to myself! Plus i do hate injustice of any kind ...i weep for people whom i feel have suffered this! I think i have gone far too long Sylvia..i dont mean to..there are so many people here with their own stories ...
I shall let you know how we get on...and i will take on board all the things that you have said to me!
Please take care ..and i hope your decorating went well!
Dulcie xxxx
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I meant (at the end of my post) i babbled to much! Sorry!
Dulcie xxxx
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Hell Dulcie,
Thank you for your post.I was so glad to know that you had your drain out two days after surgery. That sounds more like it. After fourteen days you should be feeling quite well if you have been eating, drinking, resting and sleeping properly. With all that is going on with your life you may not be doing this.
Do not worry too much about the scans. Although I was worried about the radiation, I knew that I had to have them so that my medical team knew exactly what was going on in my body. If I had to do it all over again, I would. It is the only way to go on living. I do feel perhaps that after standard treatment and when we are into regular physical check ups, I think I would have reservations about regular CT scans and the like. They seem to do that a lot in the US, but I do not think they do that here in the UK. I think pre treatment and post treatment is sufficient, but I must emphasise that is my own personal view. If I were you I would not risk not having the radiotherapy or scans.
As for your OH, and all the tests he has been having, the consultants have to be thorough and find out exactly what is going on in his body, so that they know how to treat him. I do hope he got good news from the bowel specialist today.
A patient is kept very busy with appointments while the consultants try to work out what is wrong. I remember when I was diagnosed, that I felt I had crossed over into another world. I felt so small and vulnerable sitting around in clinics and being prepared for ultrasound, biopsies, cannulas in the back of my hands for the CT scan and bone nucleide scan and then all the cannulas for the chemotherapy and being in a world of seriously ill people to which I felt I did not belong. However, you get used to it and you settle down. I found all the staff dealing with me helpful, dedicated and cheerful and I had some really good conversations with them. I realise that things may have deteriorated since then.
I hope all will go well with you on Friday and that you will come away from that appointment feeling more reassured.
Try to have a pleasant weekend, so that you are both ready for a busy week next week.
Keep posting and let us know what results you get and what lies in store for you, so that we can support you.
I hope that you OH's blood test for Bence Jones protein comes back negative.
I hope the iron tablets will help him and as for the inhalers, it seems very common for GPs to give these out these days. If I were you, I would try to deal with your hospital consultants. I did not have any contact with my GP until after my diagnosis. I did not know him, as I had had no reason to see him. I did get an appointment to introduce myself to him. Throughout my treatment I dealt with my oncologist, my breast cancer surgeon, and my breast care nurse. I must admit those three women were a dream team for me and always went that extra mile. I also accepted the offer from my oncologist of having the Hospicecare nurses come to visit me as often as I liked. They were wonderful women and I enjoyed my conversations with them. They can also deal with any kind of problems that you have. I saw one of them today and she said how well I looked. One of those nurses ended up being diagnosed with breast cancer. She got through it all and had the same oncologist and breast cancer surgeon that I had.
I also had a lot of support through a homoeopathic consultant at the Royal Bristol Hospital. I saw her for about five years from the day I was diagnosed. My breast cancer consultant surgeon referred me to her. This was all NHS.
It could be true that age plays a part in how you are treated. I think there is probably a reluctance to treat very elderly people with chemotherapy because it has such a harsh effect on your body and your immune system. An elderly neighbour of mine had hormonal breast cancer in both breasts. She had a bilateral mastectomy followed by radiotherapy when she was 83. She got through it all and went on Tamoxifen. She died this year of old age at 90, no trace of cancer!
I think that it is good to be outspoken. I am the same. I am assertive but polite when dealing with medical staff. My GP knows this and she knows I research everything.
Like you, I hate injustice of any kind and I am not afraid to tell people a few home truths if I think they are out of order. I remember something I read about bad things happen because good people let them!!
You have such a lot going on at the moment. Get through tomorrow. Try to take it easy at the weekend. Face next week, one day at a time, and focus on the following weekend, when that week will be behind you.
Sending kind thoughts your way.
Sylvia xxxx0 -
Hello Dulcie
I have just looked up the Royal Marsden Hospital for you and there is an e-mail information page. The link is:http://www.royalmarsden.nhs.uk/contact/pages/online-contact-form.aspx
I hope this helps.
Best wishes
Sylvia0 -
I am to begin Taxotere/Cytoxan on July 31 . . . any "helpful hints" or loving warnings . . . I'm scared . . .
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Hello FernMF,
Thank you for your post. I am sorry to hear that you have been diagnosed with TNBC and have already had surgery, and are now facing chemotherapy. Please do not be afraid of chemotherapy as you will get through it and you will be alright. We shall do all we can to support you and reassure you.
Before you begin your treatment, it is usual in this country to have an interview with someone who is part of the chemotherapy team to let you know what will happen and ask you various questions. There is nothing to worry about.
All chemotherapy drugs have side effects, but the extent to which you suffer from them is very individual. I was interested to know that you will be having docetaxel(Taxotere) and cyclophosphamide(Cytoxan)together, as I had three months of cyclophosphamide and epirubicin together and then three months of docetaxel on its own. Taxotere is very effective for TNBC, so hang on to that. Cytoxan is also very effective, so the two together should be potent fighters.
Go to your first session with confidence. It is the waiting that is the worst. After that you will settle in to a routine. You will lose your hair, unless you have requested an ice cap. I wore a wig throughout my treatment and it did not bother me. Some chose to reveal their baldness and other go for scarves, but those were not for me.
I think the most important thing is to keep well hydrated, especially in the few days immediately after treatment. Get plenty of rest, be strong and keep looking forward.
I hope this helps.
Warm wishes,
Sylvia.0 -
Sylvia: I only pop on this site intermittently and am encouraged each time I do.
I wanted to offer a big bow of respect to you & the time you take to 'hold' & support women on this thread. Your warmth & compassion radiate through your considerate words.
Bless you, & bless us all in the UK! (especially after the rotten summer we are enduring!!!)
Warmly
Buddhawolf x
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Hello BuddhaWolf
Thank you for popping in. It is always so nice when someone pops in to say hello and express appreciation of the thread. It makes all the hard work worthwhile. I do hope that it is helping women out there and that it helps them to know that breast cancer does not have to be a lonely and frightening experience. With TNBC in particular, I feel that it is no longer in the dark cupboard that it was not so long ago.I do so hope that all is well with you. I see that you have now gone well past two years since diagnosis. Keep up the good work.
I do hope that we are now in for a bit of sunshine and some dry conditions.
From reading the press and watching and listening to the news, it looks as though London is not a good place to be with the Olympic Games fast approaching. I cannot believe all the disruption to everyday life for the sake of two weeks of games. It seems as though the powers that be want the lives of ordinary people put on hold for two weeks or more. As someone said the other day, these games have been paid for by ordinary people but they are for the benefit of the rich. I am sure, if they could send the citizens of London all off to the moon for a few weeks, they would do it! I may be a kill joy but I think the 12 billion spent on the games would have been better off going towards health care and education and helping the 100,000 children suffering from malnutrition and hunger in this country.
I hope you have a good weekend and thank you once again for your very kind words. If you have any friends or acquaintances with TNBC or any other kind of breast cancer, please let them know they are welcome on this thread. We have to get British women to know that it is alright to come on a thread and pour their hearts out. This is what we are here for.
Pop in again any time.
Warm thoughts
Sylvia0 -
Hello everyone
I was thinking again about the post from FernMF about tips for chemotherapy and I am hoping that some of you will post with ideas. Because I had so few side effects I did not experience chemotherapy as difficult but I know from those of you who have gone through chemotherapy on this thread that this is not always the case. I think it is prudent to confront chemotherapy without thinking that you are bound to have side effects that others have had. With today's treatment, and all the anti-nausea and anti-sickness drugs that are available, there should be no real reason to suffer those two side effects. Women must make sure they have meaningful dialogues with their oncologist and chemotherapy nurses to make sure everything is done to avoid these two side effects. I am not one for taking unnecessary medication, or only something very simple. We all know that ginger is good for nausea and sickness so stock up on grated root ginger, lemon and ginger tea, ginger biscuits and sugarless ginger ale. Dry biscuits and crackers are good as well.There is a good website with lots of sensible tips. It is Breast Cancer Support, Chemotherapy and Radiation Hints and Tips. The link is www.truefacesofbreastcancer.com/tips.htm
There is a good account of going through chemotherapy and radiotherapy. It is stated there, something I truly believe in, and that is to take one day at a time for these treatments. Go to your first appointment, see how you react to your treatment, do all you can to be fit for the second treatment and then deal with that.
I have been looking up some statistics for the estimates for breast cancer in 2012. I wanted to see how we in the UK compare to the US and Canada, taking into consideration the population of these two countries. This is what I have found.
American Cancer Society - estimates for 2012.
226,870 new cases of invasive breast cancer in women.
63,000 new cases of DCIS.
39,510 deaths from breast cancer.
Chances of having it 1 in 8.
Chances of dying from it 1 in 36.
The good news is that the death rates are going down.
There are 2 1/2 million breast cancer survivors in the US. I think the population of the US is roughly 313 million.
In the UK there are 50,000 women a year diagnosed with breast cancer. This obviously includes Scotland and Wales and presumably Northern Ireland, but about 45,000 of these are in England.
There are 12,000 women a year die of breast cancer. One woman is diagnosed every ten minutes with breast cancer.
There are 550,000 women living in the UK today who have had breast cancer.
For women under 35 breast cancer is the most common cancer diagnosed.
This is something that is of great concern to me. We are told that cancer is a disease of old age, that it takes years to develop, and that the longer we live the more likely we are to develop it. I would really like to know why it is taking such a toll on younger women. Could it be earlier and earlier menstruation, could it be the birth control pill, could it be the diet, the environment, lack of physical activity? We must find a way to stop all this.
The population of the UK is roughly 62 million.
From Canada the figure are, estimated for 2012:
New cases of breast cancer 22,700
Deaths from breast cancer 5,100
The population of Canada is approximately 34 million.
If we take these three countries, the rates of diagnosis of breast cancer and deaths are about the same allowing for the difference in size of population.
I hope that most of you have managed to have a good weekend, but I know that some of you have been having a bad time. I hope to hear from some of our regular posters soon. Interactive communication is very important.
With very best wishes.
Sylvia0 -
Hello everyone again
Have a look at the chart at the following link for breast cancer cases by country.
http://www.nationmaster.com/graph/hea_bre_can_inc-health-breast-cancer-incidence
You will see that Japan and Greece are doing far better than the rest of the countries.
Best wishes
Sylvia0 -
sylviaexmouthuk thanks so much . . . I leave for the beach tomorrow - so I have one week of vacation (planned LLLLOOONNNNGGGG before the cancer showed up) before the chemo starts . . . the days before double mastectomy were more troublesome and scary than the actual surgery day and recovery - so I am hoping for the same with the chemo . . I am a healthy (ha ha) strong, fit 56 year old . . .
About the chemo mix - I have an underlying heart condition that prevents the use of some chemo because it has a higher rate of destroying heart muscle . . I would assume that is why I have the mix that I do.
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Hello FernMF
Thank you for your post. I do hope you will have a good week's break at the beach and that you will come back feeling ready for your chemotherapy. Relax, and enjoy every day of your break to the full.I can understand what you said about the days before your double mastectomy being more troublesome and scary than the actual surgery day and recovery and that is a good message to send out to all of those viewing and waiting for surgery. I can also say that I found it more frightening waiting for my mastectomy than having it and recovering from it. It is the waiting that is terrible because you cannot switch your mind off. The surgery, or more specifically being in hospital and away from home that bothered me the most.
You will be fine once you start your chemotherapy and you can come here to tell us all about it after your first session and come here for help and comfort if you have any problems.
It is good to know that you are a healthy and fit 56 year old. I think it is useful if you start off chemotherapy in a healthy condition. I certainly think it helped me. It is strange that, even when I was diagnosed with breast cancer, I still thought of myself as a healthy woman, because I had never been ill. That sounds quite mad but it is the truth.
I can understand why your oncologist has opted for cyclophosphamide and docetaxel. I know that the group of drugs known as doxorubicin (Adriamycin) and epirubicin (Ellence) are supposed to be very nasty. I think they are both red and known as the red devil. When I first started looking at this forum it seemed that in the US women were being given doxorubicin and here in the UK epirubicin. I have read that doxorubicin can cause heart damage, so you would not want that if you have an underlying heart condition. There are variations on chemotherapy anyway. With some women getting a mixture of three different drugs together, such as FEC (fluorouracil, epirubicin and cyclophosphamide) and then a taxane, such as docetaxel or paclitaxel. My oncologist told me that docetaxel (Taxotere) was less harmful than paclitaxel (Taxol). One day she asked me how I was getting on with all the chemicals being pumped into me. I said I was alright.
That is all for tonight.
Kind thoughts
Sylvia0 -
Hello sam52
I hope you are feeling good this evening as you must now be on your long summer break from school.
On the TNS there has been a lot of posts about "skin mets" and photographs of these rashes. I am a bit confused about this. My oncologist told me when I was going through treatment that the most obvious sign of recurrence was a rash along the line of the mastectomy scar. When I hear skin mets I think this must mean metastases to the skin from the breast. I thought that with breast cancer, metastases went to the lungs, bones, liver or brain. Since I like to have everything clear in my mind, I would appreciate your input.
I hope everything is well with you and your family.
Love, Sylvia
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Hi sylvia, it is quite common for skin mets. I was told to check for this on a regular basis. Any breast rash or pimple like symptons need to be checked.
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Hello BernieEllen
Thank you for your post.I was interested to know that skin mets is quite common. What I am trying to clarify is what skin mets actually is, besides being a rash. Like you, I was told to watch for any rash that appeared on the mastectomy scar, as this would be a sign of recurrence. This is what is important. It is a recurrence and not metastases. This is why when someone posts about skin mets, it is confusing and might seem to indicate metastases from the breast to the skin, in the breast area. The question is are these "skin mets" metastases or are they a recurrence?
I hope all is well with you and your family. How are you getting on with setting up a home for your niece in the field adjacent to your home? I hope you will get some of the dry weather that we are experiencing at the moment. I am hoping it will dry up some of the landscaped grounds around our apartment complex.
I hope you have a lovely weekend.
Best wishes
Sylvia0 -
Hello everyone
I have been having another look at www.trufacesofbreastcancer.com and found the article "The TRUE Face". The link is:www.thetruefaceofcancer.org/trueface.htm
There is a good criticism there about October....Breast Cancer Awareness Month. This is about all the pink and niceness of this month, but it does not depict the true face of what breast cancer is all about. What Breast Cancer Awareness Month should address, according to this article, is what women have to suffer because there is no cure for this disease. It further says the TRUE faces of breast cancer should be shown, so that more aggressive strides will be taken to find a cure.
There is a lot more in this article and I do recommend you to read it.
It is a nice sunny day here in Exmouth, with no rain in sight. Unfortunately a nice day here seems to bring out a lot of bad behaviour in people.
Best wishes
Sylvia0 -
Hi Sylvia, I know that you often visit the TNBC site. Inmate, one of the ladies on the site has explained all about skin mets.
Thinking of you.
Bernie
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Hello Sylvia!
Just a quick post.....I have already had 9 days of holiday (still counting!).We have been busy on the allotment, tackling the latest project - constructing a shed (but it can't be an ordinary shed; it has to be one with an extension and extra windows!)
Today was a music festival: 'River of Music', held at various venues around London - finally a glorious day!
On Monday I am off to Rochester in Kent where I went to (secondary) school, to meet up with a few women from another bc site. One of them is a tour guide in Rochester Cathedral and had offered to give us a private view!Should be interesting and also quite nostalgic as I used to have my school Christmas Carol service and Founders Day in the Cathedral - but haven't been back to that area since 1968!
On the question of skin mets - yes, they are mets, unfortunately; once they have appeared it is only a matter of time until mets are found elsewhere.I know this from a couple of people I have known, both of whom had treatment for skin 'rashes' (chemo) and then had further spread in the lungs.Interestingly, there is now a new treatment called 'electrochemotherapy' specifically for skin cancer,skin mets or any tumour which presents itself on the surface of the body. I believe it is showing very good results, but whether it would halt disease progression is doubtful.
I hope you can enjoy the promised good weather in Exmouth.....Summer at last??
With love,
Sam
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Hello BernieEllen
Thank you for your post. I did read Inmate's posts on the Calling all TNS as we are all in this TNBC together. I found it all of great concern. It is about time that a cure was found for this dreaded disease. It is bad enough being diagnosed with primary breast cancer and going through the treatment, but it must be even worse dealing with metastatic breast cancer even though treatment can keep us alive. It makes me realise even more that if we spot a rash we must get it treated straight away, even more so to rule out inflammatory breast cancer, where there is not necessarily a tumour but a red or darkened skin over the breast with rash-like symptoms. This cancer is rare but very serious, with poor survival chances.I often skim through the Triple Negative forum as a whole, but tend to think there are too many threads and that it is in need of being compressed.
I hope you are having a good weekend.
Best wishes
Sylvia0 -
Hello sam52
It was so lovely to hear from you. I thought you might be busy on the allotment, but I imagined you digging, not constructing a "shed"! Good luck. That sounds like some shed! Are you going to be taking in lodgers?The River of Music sounds lovely.
I hope you have a nice day in Rochester to meet up with a few women from another BC site. Please post and share with us any new information or any feelings coming back from these women.
Thank you for clarifying skin mets. It is now quite clear in my mind. It seems to me that when I was told that the most likely recurrence was on the line of the mastectomy scar, that recurrence was not the correct term to use. What should have been stated was that a rash on the skin in that area was metastatic breast cancer and that this meant it would spread to other organs or had perhaps already spread.
I was really interested to know about a new treatment known as electrochemotherapy, which is specifically for skin cancer, skin mets or any tumour which presents itself on the surface of the body. It is good to know it is showing good results, but disappointing that it would probably not stop skin progression.
We have been very busy here in Exmouth. Raymond has been repainting the whole of the apartment. We have just a bedroom to do now. I have been spending hours and hours in the grounds doing the fiddly work that the gardener does not have time to do. I also spend a lot of time doing paperwork etc. for the running of our apartment complex, in addition to dedicating myself to this thread. Today we are taking a rest later on and going into Exeter.
This morning, on the news, I was saddened to hear of the death Angharad Rees, the actress, dead at 63 of pancreatic cancer. There are too many people dying of this dreadful disease.
When you have time, have a look at some of the latest links that I have posted and let me know what you think.
I think of you often.
Love
Sylvia0 -
Hello everyone
I hope you are all getting some well needed sunshine today, as we all know we need to keep our vitamin D levels up. Do not overdo the sunbathing and keep well away from it if you are going through radiotherapy. I remember a lady turning up for her radiotherapy session, when I was going through it, all sunburnt from lying out in the sun the day before.Another article for you to have a look at. The title is Where Is The Cure? The website is
http://www.truefacesofbreastcancer.com Where is the Cure? This is a most interesting article. The link is:
http://www.truefacesofbreastcancer.com/-where-is-the-cure.html
I hope you are all having a good weekend. Special Hellos to Dulcie, linali, Lint_Roller_Derby, Karen_Sheffield, Karen3, youngmommy, Maria_Malta, Christina1961, mccrimmon324, bak94. Make the most of Sunday.
Best wishes to all of you reading this thread.
Sylvia0 -
Hello Sylvia ..i hope you are having a good weekend?
I had very good news on friday! The surgeon found 12 lymph nodes and all where clear..my tumour was 6 and a half inches..rather large! So i will see the onc about possible radiation..then i will see either the onc or surgeon every 6 months..he did not mention anything much to me..especially about recurrance..
My OH is now waiting to see ENT this week and is going to have a second CT scan on his tummy this time! Plus i shall be having one on my lungs..i cannot say i'm looking forward to it at all!
I might have told you my family live in NZ? My son had promised to bring elder grandson to see me..he has now renegded on it! He has been promising the boy since before my diagnosis..He has also said he would not be bothering to go near my OH ..as his illness is his family's problem...then he said he would not bring the boy near 'illness' ..does he mean my illness or the illness my OH has has yet to be diagnosed with! Does he think cancer is catching? He is so unpleasant and ice cold that i have told him not to bother coming at all...But i do love my grandson with all my heart...but he has used him as a 'pawn' in the past!Which broke my heart at the time...they lived in the UK at the time..my little grandson had asked if he could come and live with me ..when he was seventeen! Bless him!
Goodnight xx
Dulcie xxxx
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Hello Dulcie,
Thank you for your post.I was so glad to hear that you had good news on Friday. I was so happy for you that all those lymph node were clear. Are you sure that your tumour was 6 and a half inches big. Do you mean 6 and a half centimetres? Mine was about that and was considered large. I do hope all will go well when tou see your oncologist about possible radiotherapy.
I was surprised to learn that you are going straight to six monthly check ups as the standard used to be to start off with check ups every three months for two years and then go to six months. I suppose all hospitals are different. I think I am lucky to still be getting six monthly check ups after seven years.
I do hope your OH will have good news this week as well and that things will be good for you when you have the scan on your lungs. Try not to worry about the scan on your lungs. You will get through it and it is best to find out what can be done.
I did not realise that your family lives in New Zealand. It is always difficult when family members are separated by long distances. I would try not to fret too much about all of this. You and your OH have to look after yourselves and sort out your health problems. You need to support each other.
As for your son in NZ, it must be quite difficult organising anything from such a distance. Does he have a reason for not now bringing your grandson to see you? Does he have just the one child and how old is he? Family problems and manipulations can be very destructive, so, if I were you, I would let it go and just get on with your life. I have found it is best to ignore such family complications as, if you let your son see it is bothering you, he might do it all the more.
There are always problems with family members when there have been family break ups. You hear so many stories of problems between children from first marriages with their parents new partners in second marriages or relationships, and I do not think you can alter this. Again, it is best to shrug your shoulders. You do not want your son causing problems between you and your OH, especially considering what you are both going through. Do you have any other children?
People do have strange reactions to their friends and relatives who are diagnosed with cancer. More than any other illness, I think it strikes great fear in people. Your son seems to be afraid of the word cancer and so psychologically he might feel that it might be frightening for his son. People have all kinds of ideas about cancer and it is difficult to change this. You have to remember that for a very long time cancer was a word not to be mentioned and patients were more or less hidden away.
It is a shame but parents do use their children as pawns, especially when it comes to grandparents and aunts and uncles.
The best policy is to ignore it all. I think a diagnosis of cancer soon sorts out those family members and friends that really care about you. I firmly believe that cancer sufferers or survivors have to try to keep people who have a negative effect on them out of their lives. I think negative stress is poison for us and has to be avoided.
At least the sun is still shining over most of the UK, so let us all make the most of it and whatever our individual problems this week, let us try to face them with optimism.
Wishing you all the best
Sylvia0 -
Hello everyone
I hope you all had a good weekend and that this week you will try to read some of the information on the links that I have been giving you. Believe me, they are easy to read and very informative. Remember what we said long ago on this thread, knowledge is power.Another link that I have been reading on www.truefacesofbreastcancer.com is Fear Of Metastasis. The link is:
http://www.truefacesofcancer.org/metfear.htm
It is interesting reading. The most important thing to remember is that, should mets occur, there will be some treatment that could put you into remission for a long time.
If you have any problems with the links, where it says .org, you should be able to find all of these by clicking on www.truefacesofbreastcancer.com That is how I found them all.
By the way, are any of you drinking white tea? I recently read that it has more polyphenols than green tea.
Thinking of you all.
Sylvia0 -
Hello everyone
I thought I would post a few photographs of some of the flowers growing in the apartment complex where I live. I thought is would be a good way of cheering people up and starting the week on a positive note. I do such a lot of work in the grounds and everyone always says how nice they look.
The first photograph is of a Peace rose, which is my favourite rose.
The last two are of lace-like hydrangea which have done very well this year because of all the rain.
Best wishes
Sylvia
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Hi Sylvia,
Loved the flowers in particular the lace hydrangyea.We have alot of tall flowers which have grown really big because of the rain but are flopping in the wind. Not sure how my potatoes are doing in all this rain. We only planted a few.
Truefaces is a very positive site and I hope that any doctors would pay attention to the chat to a doctor.
The skin mets is a very worrying condition and I feel very angry that my Gp and consultant ignored my skin condition for ages and I wouldn't have had a biopsy or seen a dermatologist if I hadnt gone privately.
I think some of my anger comes from my brother-in-laws situation who was never diagnosed until he collapsed. We do not know if they are going to offer him treatment as there were no docs around at the weekend when my husband visited him. Do they not realise by now that serious illnesses dont take a break for the weekend!
This week I have to really gather all of my supporting letters for my review of my invalidity claim. Maybe it's because I am focusing more on it but I have had alot of pain recently both in my arm and breast...or maybe its my bodies way of making me fight on.
I am going to try reiki again tomorrow and then for each Tuesday for a month. It cant do any harm.
I didn't get my results of mammogram and will have to wait 10---14 days. Will keep busy.
I hope that anyone going through treatment is not finding it too tough. One tip I was given was to keep a heat pad on my arm to warm up the veins on the way to chemo, especially after the 3rd one.
Meeting the rep from Royce bra company on wednesday. Suprisingly the majority of women at the centre have cancers other than breast, so there wouldnt be many women who want non- wired bras. I must try to convert them, at least for everyday use.
What a tragedy in Denver. Leigh and I were to see Batman that day but decided on Spiderman instead.
Hoping the weather improves
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My name is Michael and I am in the UK. My wife, Janette died in March of advanced BC. Her original diagnosis was triple negative BC, her nodes were clear. In April last year she had a prophylactic breast removal and developed a hematoma. It was downhill from there and in November last year she was diagnosed with advance BC which had spread to her lung, on the same side as the hematoma. I don't know if there is a corrolation but I feel there is. As you can imagine it has been a traumatic time for my family and I.
I am basically kicking my heels at the moment. I had been so busy caring for Janette and now I have nothing to do. Janette came from a humble background with quite poor education and yet gained a PH'd and was a leading authority on Michel Foucault. I don't want her memory to die, as we, her family evenually die, so I have decided to establish a charity. What I am asking here is for ideas. I want the charity to be specific to triple negative but I am unclear at the moment on what areas to focus on. As it will be Uk based, funding of treatments is not an issue so I am asking for ideas on what areas I should focus the charity's efforts on; should it be education, research. sponsorship? Any ideas you may have will be gratefully received
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Hello chatterbox2012 (Michael),
Thank you for your post. I was so sorry to hear about the sad death of your wife Janette in March of advanced breast cancer that was triple negative. I can imagine the grief and devastation that you are feeling and I do hope that on this thread we can help, support and comfort you at this very difficult time. I set this thread up nearly two years ago to help patients in the UK specifically with TNBC, because I thought there was not enough information or publicity about this negative receptor breast cancer that was considered very aggressive and with a poor prognosis. I was concerned also about the fact that it affects mainly younger women who die leaving very young children.I hope you will not mind if I ask you a few details about Janette so that we have a clearer picture of what may have gone wrong. You said that she was originally diagnosed with triple negative breast cancer and that her nodes were clear. You said that she had a prophylactic breast removal last April. Was that in the breast that had not been affected with cancer and had she already had the other one removed? I ask this because often when the lymph nodes are clear you are offered a lumpectomy and then radiotherapy. Did she have chemotherapy and what chemotherapy drugs did she have? Did she have a large tumour? What was her stage and what was her grade? Most TNBC tumours are grade three.
How long did Janette survive from the original diagnosis to her death. How old was she at diagnosis? I ask this because it seems that the younger you are the more aggressive the cancer is. If you have read my details you will see that I had a large tumour but was not in the most typical age group for this kind of cancer. Did she have IDC which is the most common kind of breast cancer? There are other kinds of breast cancer that have negative status receptors.
I am not a doctor so I cannot say whether there might be a correlation between the haematoma and what happened, but Janette's medical team should be able to answer such things.
I was wondering whether Janette had been tested for the BRCA1 or BRAC 2 gene.
I can imagine the trauma that you and your family must be going through. I can imagine also how empty you must feel and how you now feel at loose ends. My husband took care of me as I went through treatment from June 2005 to the end of July 2006 and it is a very busy and stressful time. Life has never been quite the same since, as you have to learn to live with the fact that your cancer can come back any time.
I was very interested to know that Janette came from a humble background, but gained a Ph.D. and was a leading authority on Michel Foucault. Did she study Foucault as part of French studies or as part of general philosophy? I ask this because I did a BA Hons at university and graduated in 1965. One of my brothers did the same course and then went on to do an M.PHIL and became a lecturer at Exeter University in the French Department. He lectured on Sartre and Proust among others. We also came from a very modest background and were the first children in the family to go to university. I became a High School teacher and taught French. My older brother also did French and became a teacher. Unfortunately he died of cancer (disseminated adeno carcinoma) in 1995 at 56. It was heartbreaking as he was diagnosed on September 18th and died on October 21st.
I think it is so admirable of you to want to set up a charity in your wife's name.
Funding could be an issue in the UK even though we have National Health. Cancer drugs are very expensive and sometimes we can be held back by NICE. This organisation will not always allow licensed drugs to be available on the NHS if they do not feel it is cost effective. The Primary Care Trusts in different parts of the country can refuse to fund them. It is not that long ago that women who were HER2+ were having to take PCTs to court to obtain Herceptin.
I think education and research are very important. TNBC is not in the dark cupboard that it was not so long ago, but there still needs to be more emphasis on it. We hear so much about the hormonal breast cancers and all that if available to treat them after standard treatment, but very little about TNBC, which nevertheless affects about 20% of women. This is higher that those affected by genetic breast cancer and yet there is so much more emphasis on this. We urgently need the emphasis to be on prevention, but we also need a cure. Chemotherapy drugs are keeping more and more women alive, especially with primary breast cancer, but these drugs take a terrible toll on quality of life and are not the long term answer.
I do hope, Michael, that my post will be of some help to you and to your family. Please feel free to post as much as you like.
Take care of your self and treasure the memories of your wife, Janette.
Heartfelt wishes
Sylvia0 -
Hello Everyone,
I do hope that you will post with some ideas for Michael.
Best Wishes,
Sylvia.
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