Calling all triple negative breast cancer patients in the UK
Comments
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Good morning.
Sylvia, thank you for thinking of me.
January is always a quiet, reflective time for me, my mum and my daughters anniveraries occur at this time. This isn't a sad time just a time to sit back and take stock of my life and what I would like to achieve in the coming year.
I am spring cleaning now, I know it is early but as the evening are slowly brightening I feel that I become more active and I can plan for my garden.
thinking of you all.
Bernie
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oh jenn not what you wanted to hear but thank goodness your bs is onto it and great that you have confidence in him.
im crossing everything that is fat necrosis..
its a good idea to have genetic testing for you might need them if you ever decide to go on certain trials.
its also a good idea to take time off to get prepared for whats next, need to be strong now and get ready but again lets hope its only necrosis.
my only other thought if you do go ahead with brca 1-2 test ask about removing ovaries as we dont need any more nasties if can be avoided.
try and keep strong as you can and it will take its course...wishing you the best outcome & we are with you all the way.
cancer sucks!
((hugs))
xx
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Hello FernMF
Thank you for sharing your good news with all of us and I am sure we are all glad to know that your cardiologist said that everything is stable with your pre-existing heart condition. It is good to know that according to your cardiologist your heart was not affected by your chemotherapy treatment. We have to remember that all the side effects we are told about from chemotherapy are possible side effects and it does not mean that we shall definitely have them.
I do remember my oncologist telling me that Taxol (paclitaxel) was more harmful that Taxotere (docetaxel), in answer to my question about why she had chosen Taxotere for me rather than Taxol.
Another week is nearly over, so have a good weekend.
Best wishes
Sylvia xxxx
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Hello Liv
Thank you for your post. You are such a busy bee!
On the news this morning I heard once again that we should spend most of our day standing up and that too many of us are spending it sitting down. Apparently there is now the idea of changing computer desks at work so that workers can do their computer work standing up!!! With all your activity you should be alright.
I was interested to know that you do not watch much television except for the news and weather. My husband and I also follow the news and weather. We also watch the Keiser Report on RT (Russia Today) and really enjoy Max Keiser, Stacey Herbert and their guests. It is a most informative programme and really shows up the bankers (banksters!) and politicians for what they really are. We also enjoy Dateline London, Question Time, This Week and the Daily Politics as well as the Sunday Politics. These are all on BBC channels. Do you get any of these?
For a great laugh we watch a comedy programme Miranda with Miranda Hart. She is side-splittingly funny! We also enjoy any kind of drama.
We both like to read a lot and read all different kinds of books.
I do hope you will be successful in getting on to some clinical trials. It will be of great interest to all of us to know what drugs are being used. I think that all of us know all the usual drugs being used but we need to know what others are being introduced.
I do hope all will go well when you have your reconstruction and again it will be of great interest to know how you get on.
I am quite busy on a daily basis as besides being dedicated to this thread and doing the very best I can to help, I am also a volunteer director in the apartment complex where I live, so I have to attend directors' meetings, compose minutes, compose newsletters, and make sure that everything is up to par, not to mention checking accounts, dealing with contractors and preparing budgets.
I love to read, especially about politics, current affairs, history and geography, and all things medical. I try to keep my languages going, mainly French, but also Spanish. I was a High School teacher and taught French, but also English as a second language. I love literature.
I also love to garden and do a lot of work in the grounds in our apartment complex.
As for my husband, Raymond, he is very much into computers. He was an electronics Chartered Design Engineer and was involved in designing all the digital stuff we now have with our televisions and was also involved in communications systems (telephones and internet).
We do like to walk but have not been doing as much as we should. We also like different kinds of music.
You might like to look at our seafront in Exmouth. The link is:
http://www.exmouthcam.co.uk/webcam/
Sending fond thoughts to you.
Sylvia xxxx
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Hello Michael.
Thank you for your post and for the link, which I have just had a look at. Things are looking up if there is to be a day dedicated to triple negative breast cancer. I do hope this will help you to raise funds.
I was glad to know that your appointment went pretty much as you expected and I do hope all will go well when you get an appointment for your CT scan and biopsies. Please let us know when you have the dates. I do hope all will go well when you see the haematologist on February 4th. I hope everything will not take too long as it is the waiting around that is very difficult and tiring.
I can imagine how awful you must have felt, returning to the cancer centre for the first time since Janette died. It must have been even more difficult to have a nurse come into the waiting area and shout “Janette”. It must have been very upsetting.
I hope you have something enjoyable planned for the weekend.
The weather here in Exmouth continues to be awful and it has been raining all day. We are all feeling very deprived of sun.
Wishing you all the very best.
Sylvia
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Hello jenn-uk.
I am sure I speak for all of us on the thread when I say we are so sorry that you are going through all this, but we shall give you all the support we can.
It is good to know that you have an excellent surgeon who is on the ball and is getting things moving. Let us hope you have good news from the ultrasounds done and all those core biopsies.
It looks as though you will have a busy time next week, but at least you will know what is going on. We shall be thinking of you on Monday and Thursday next week. By January 21st you should be all set for your treatment.
I think if I were in your situation I would want a mastectomy, but of course this is a very personal decision.
Your head must be in a whirl but just keep looking ahead and telling yourself you are going to be alright.
You did the right thing taking time off work to think this all through and to spend time with your boy as he is not in college Thursday and Friday. I hope you can enjoy your days.
It is good to know you have every confidence in your surgeon and that you know he will do everything he can to get you through this. Trust in one's medical team is so important. We are all thinking of you and wishing you well.
Fond thoughts.
Sylvia xxxx
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Hello Bernie.
Thank you for popping in. I can understand how January is a quiet and reflective time for you.
October and February are the months that affect me in this way.
I think it is good to sit back and take stock of one's life and to figure out what you would like to achieve in the coming year. It is not easy. I think all of us here on the thread want to remain healthy and do all we can to achieve this.
I can understand that you have made an early start to spring cleaning. We all feel better as the evenings become lighter and I think we are all longing for spring. It is certainly true that we feel more active as the dark days of winter begin to disappear. The other day I was doing some tidying in the grounds here, and my husband was helping, and we had a little robin keeping us company all the time. We never see robins in pairs. In the grounds we have snowdrops and daffodils in bloom, but our forecast is for cold nasty weather.
Keep well, Bernie and pop in whenever you can.
Fond thoughts.
Sylvia xxxx
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Hello sam52.
I hope all is well.
I thought you would like to know that I received a letter today from my breast cancer surgeon who is also my endocrinologist. It was a follow up to my check up last October. At that time I asked whether I should have any more blood tests to check my parathyroid hormone level, as it was three years since I had my parathyroidectomy. The answer has come back that I do not need to have any parathyroid blood tests done.
I was wondering what you thought about that? I am in two minds about it, given that when it was diagnosed back in 2005, I was told that I had probably had the adenoma for some time and yet had no symptoms of which I was aware. How do we know what is happening with the three remaining parathyroid glands? It is especially important given that it is possible there is a connection between an over active parathyroid gland and the development of breast cancer.
The good news is that a DEXA scan is being organised for me. I mentioned at my appointment in October that it would be three years on January 12th 2013 since I had my last scan, second of two, and that I would like to know what was going on with my osteoporosis. I have not got a date as yet but I hope it will not be long.
If I still have the osteoporosis, then I have to conclude that it was not caused, at least solely, by the parathyroid problem, because I have read that this kind of osteoporosis is curable, once the problem parathyroid gland is removed. If I still have the osteoporosis, it must also been caused by the chemotherapy and radiotherapy, OR something is again not right with the other parathyroid glands.
You know I shall value your opinion about all this as we went through it together.
I am longing for spring and for some sunshine.
Love.
Sylvia xxxx
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Hello linali
I am just popping in to make sure you are alright, as we have not heard from you in a while.
Are you busy at the centre or are you busy with famil and little Oskar?
Thinking of you.
Sylvia xxxx
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Sylvia, someone posting on another board about recurrence after 4 years. "dayzoo" is her "name" I suggested to her to visit here...
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Hello FernMF
Thank you for your post. I shall look out for dayzoo and we shall all try to help and reassure her in any way we can. We are here to support anyone that needs it and it does not matter which country you come from, even though I started this for the UK because I thought we were in the dark ages and told nothing. I can see from postings that there has been improvement in this respect since I was diagnosed in 2005, when it was obvious that the medical experts were not used to being asked questions by patients.
Thank you for looking after dayzoo and inviting her to join us.
Thinking of you.
Sylvia xxxx
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Hello Liv.
I shall look out for Carol and Peggy and I am sure we shall all do our very best to help them, guide them, support them, inform them, comfort and reassure them in any way we can. Cancer is a journey that we do not have to make alone.
Thank you for your confidence in our thread.
Best wishes.
Sylvia xxxx
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Hello Mumtobe (Carol).
We have not heard from you recently so I am just popping in to say that I hope everything is alright and that your weekly chemotherapy continues to go well. You know if you have any problems we shall do all we can to help. I hope all is well with baby Emma.
Best wishes.
Sylvia xxxx
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Hello Sylvia & All,
Things are well on this side thank God. Only 4 more taxols to go. Thank God I have had minimal side effects with the weekly dose and my hair is coming along well, speckled with grey but I'm darker than I was and look forward to feeling the breeze in my hair. Have been going topless for the last number of weeks and everyone has admired my new do
. Fatigue has hit me like a ton of bricks, this has been the worst side effect. Met the doctor on wednesday and he was asking me how I felt, I said great aside from the fatigue which he laughed off as being 'nothing' and to get plenty of rest, he has obviously never had fatigue and a new baby!! Emma is keeping us busy but she's such a good baby. Have her christening tomorrow which I'm really looking forward to, her special day out. Hope everyone is feeling well and hopefully we can all enjoy a healthy 2013 xx0 -
Hi Sylvia,
Liv referred me to this thread, thanks Liv! I'm new on this board, and have just been reading all the posts, and I get so much reassurance from what everyone says. I love that we don't have to do this alone, but at the moment I feel like I'm just doing the bare minimum, and barely coping some days. I found a lump by accident early in May, was sure it would be benign, it wasn't. Had left mx, 4 sessions of chemo, endoxan and doxorubicin (adriamycin), 25 radiations. Finished all treatment at the end of October. Started working again, half days November, full days December. I live on my own with my 2 beloved dogs, and have a good network of friends. I try to get to the pool to swim at least twice a week, have a yoga class once a week and do yoga at home. Am struggling with anxiety, do a lot of deep breathing meditation, and the exercise helps, even tho I think I'm too tired to do anything.
My first 3 month checkup is on Jan 23 and I hope once that is done (and hopefully clear) I'll be able to move on more. I hate being this obsessed about my health, worried at every pain or irregularity, constantly checking my remaining breast for lumps. But it is making me dig deep within to come up with how to deal with it all in a positive way, with grace and humour.
I haven't had the BRCA test, my Dad had lymphoma when he was 73 and is fine today at 91! My Mom had no sisters and her mother died young of heart problems, so we have no history from her side. I have 2 wonderful sisters and 4 nieces and wonder about them, at least to know that there are no genetic links - what do you think?
I've lost weight since the end of radiation, about 6 kgs, struggle with lack of appetite, but try to eat healthy stuff, do lots of stir frys and am not into junk food much (the odd piece of cheese cake is good) and fruit, which is plentiful here at this time of year.
I know that I've come a long way already, that I am stronger physically and coping emotionally, have the odd pity party, but don't dwell there! Thank you all for being out there, for your courage and grace especially, and all the information and knowledge too!
I have private health insurance with a generous oncology benefit, was told by my onco that I'll have check ups every 3 months for 2 years, then every 6 months etc. They do blood tests for cancer markers and liver function, xray of lungs and heart, liver scan. Not sure if they do all of this every 3 months, or this is just for the first one, will find out soon! I get so nervous when I think of it, then get all philosophical then eventually get rational - my head gets crazy sometimes!
Love Carol
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Hello Carolben (Carol).
On behalf of everyone on this thread I would like to give you a warm welcome and assure you that we shall do everything we can to be of help and comfort.
I have read all your details with great interest and feel that you are doing a great deal to help yourself. I hope this thread will provide some great companionship, as we have some very nice caring women on it. You have already gone a long way on your journey and have been through chemotherapy, surgery and radiotherapy. You must have been very relieved at the end of October when you finished all the standard treatment. It is a pity that you did not find this thread on diagnosis, as we could have gone through your journey with you.
It is good to know that you have recovered well enough to be back in full time work. I hope you have a job that you enjoy and one that is not too stressful.
It is difficult going through all this when you live alone, but thankfully you have two dogs and I know from dog owners what loving and faithful companions they can be. I am sure that they bring you plenty of joy.
I was glad to know that you have a good network of friends and I am sure they have helped and supported you through your cancer journey.
You seem to be very active physically and that is a good thing. You must be fit with your swimming and yoga.
I am sure we can all understand that you are struggling with anxiety. I am sure we have all been through that. It starts when waiting for a diagnosis and continues throughout treatment. Exercise is very therapeutic and can make a person feel really good. I know that I always feel better if I can get out into the fresh air. I still have moments of anxiety seven and a half years after diagnosis, but most of the time I can deal with it. Laughter is very good for lifting the mood and I try to watch programmes on the television that make me laugh. Our Bernie, from Ireland, has brought a lot of laughter to us all and we hope she will continue to do so. She will be the first to tell you that you will be alright and things get better as time goes on.
I shall be thinking of you on January 23rd when you go for your first three month check up. That is probably the first hurdle after standard treatment finishes. With triple negative I think we all experience a strange feeling of isolation as the standard treatment finishes, because we do not have hormonal treatments to take for possible prevention. We are in a kind of shock again after all the activity of hospital visits and treatment. I do hope that you will have nothing but good news on the January 23rd.
You are not alone in being concerned about your health and checking your breast. It is something we all go through but it gets better as time goes on. I check my remaining good breast at least once a month and feel around under the arm. My cancerous breast was the right one.
A cancer diagnosis does make you go deep within yourself, because you have had to face up to your mortality.
I have to finish for the moment, but I shall continue posting later on.
Warm thoughts are coming your way from the UK to South Africa.
Best wishes.
Sylvia xxxx
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Hello again Carolben (Carol).
You were asking about the genetic test for BRCA1 or BRCA2. I can only go by what I was told by the medical experts. If you are reading from the beginning of our thread you will discover that I have quite a lot of cancer in my family on my mother's side. My maternal grandmother died in 1955 at age 70 of metastatic breast cancer. She had two daughters, my mother and her sister, both deceased but neither had any cancer. In fact, of all my cousins on that side, especially the three female cousins, I am the only one to have been diagnosed with breast cancer. I was told after seeing a genetic nurse that I did not qualify for genetic testing, because I did not develop cancer at a very young age, neither did my grandmother and that if you have genetic breast cancer it usually develops at a young age. I was told that my breast cancer was just a rogue case. If I were you I would talk to my oncologist about this. I do not know your age. If you can afford to go privately, then I think you can have it regardless of age. I was told some years ago that here in the UK it costs three thousand pounds. If you think it would give you peace of mind then go ahead and getting genetic testing if you can. I was told that only about 5% of people with breast cancer have the faulty genes.
You should get back to your normal weight as time goes on and you should get your appetite back. It sounds as though you take care of your nutrition and eat healthily. You cannot go far wrong if you are eating plenty of fruit and vegetables. We have had lots of discussions about nutrition and healthy eating on this thread and I think, on the whole, the regular posters eat healthily.
I certainly think you have been doing very well and long may you continue.
I am sure Michael who posts regularly will be interested to know about your father's lymphoma at 73 and to know that he is still alive at 91. Did he have non-hodgkins lymphoma?
It looks as though the check ups are the same as we hear about on the thread for the UK and other countries. We start off with check ups every three months for two years and then every six months. That is what I did and I alternated between the oncologist and the breast cancer surgeon. I have also been having mammograms every two years. We do not have all the other things that you mention, just physical check ups. The consultants depend on patients to get in touch with them if they have signs or symptoms that something is not quite right.
Try not to worry and just take one thing at a time. It is not long to wait until January 23rd and then you can start to relax. Post as often as you like and talk about anything you like.
That is about all for today.
Love
Sylvia xxxx
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Hello Mumtobe (Carol),
Thank you for popping in to let us know how you are getting on. Hang in there. Fatigue is the most common side effect of chemotherapy, but it will soon be over for you, just four more weeks. Bear in mind that you are looking after a baby in addition to having chemotherapy, so that is a lot with which to cope. Just try to rest whenever you can.
I hope all goes well with the christening tomorrow.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia
Thank you for your PM.
I have seen your post above; I was interested to read that it was not thought necessary to have any more blood tests for your parathyroid, and that you will get an appointment soon for another DEXA scan.
It is very late now (12.30 am) and I am getting up early to drive up to the Midlands to spend the weekend with my father, so I will answer this post when I get back.
Love,
Sam xx
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hello Carolben (Carol) ((hugs)) so glad you found us here.
glad to hear you have a good network of friends & 2 of mans best friend, your doggies, what type are they? i have 2 little naughty but gorgeous dogs, one is a (miniature) maltese poodle (a boy) and a miniature maltese poodle (toy) a girl...she rules the roost and teases him continually. he is debonair and goofy at the same time, a complete walk over and she is sharp and with it and runs rings around him..they are the greatest lovers and best friends. why arnt humans like doggies?
carol now you have had the main treatments its time to find the new you as i dont think we will ever be the same as before diagnosis and thats not necessarily always a bad thing.
the whole cancer thing can absorb so much of us. my take is, for sure ive got cancer and i dont know what is going to happen in the future, its there but ive also created a new outlook. im alive now and that damn cancer is only going to make my every day life a bit better. now i appreciate the smaller things that i took for granted, now I smile & laugh a lot more, i love my friends and family a lot more. must admit i shop a lot more ..naughty! if the cancer has to be a part of me, well then it has to live my life as i refuse to live its completely.
my thoughts on brca tests are to do it, you never know when you might need to have done it to go on a certain trial if needed.
have a great weekend
xx
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hello mumtobe - glad things are going well with you and only 4 taxols to go. my hair just started to grow back, it was just over 1 cm when i was off chemo for a couple of months, now back on chemo it has stopped growing but isnt falling out..
good on you going topless.fatigue, cant imagine, you must be exhausted with a new baby and chemo. try to be gentle and nurture yourself whenever you get time, bugga the housework. mine would hit on the 4th and continue till the 8th day. mind you i didnt have a new baby..((hugs)) to emma.
its the year of the woman 2013...bring it on i say.
take care
xx
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Hello sylivia - how are you lovely?
next they will have us jogging whilst working.
my all time favourite shows were 'steptoe & son & 'faulty towers' & keeping up appearances, for me , no one does comedy better than the brits.
im always looking for clinical trials that are relevant to me and luckily my onc encourages me to bring any new research i find. we always go way over time when i see him and his protective receptionist told me off in an endearing way, luv her. she said do you realise that he now has missed his lunch and is behind for his afternoon clinic? will try next time not to ask so many questions...lol
im looking forward to my reconstruction and as im going to have the non cancerous breast off it is something to look forward to, perfect boobies less the nipples, not so perfect but it will do.
cant believe you are also a volunteer at your apartment complex, you would be so good at that too.
your love of literature.. gawd forbid what you must think of mine, i just spit it all out and definitely not in literature's lovers way.. we are all different
lucky you have raymond for all your computer & internet needs, technology is always changing and hard to keep up with.
had a look at exmouth, looks lovely.
my thoughts are always with you.best wishes bernie, you can come and do my spring clean even though its now summer, never too late though.
xx
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A young couple, just married, were in their hotel honeymoon suite, on their wedding night. As they were undressing for bed, the husband who was a big burly man tossed his pants to his bride and said, ‘Here, put these on.’ She put them on and the waist was twice the size of her body. ‘I can't wear your pants,’ she said. ‘That's right,’ said the husband, ‘and don't you ever forget it. I'm the man and I wear the pants in this family.’
With that she flipped him her panties and said, ‘Try these on.’ He tried them on and found he could only get them on as far as his kneecaps. ‘Heck,’ he said, ‘I can't get into your panties!’ She replied, ‘That's right, and that's the way its going to be until your attitude changes!0 -
I luv it!
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Hello everyone.
I am just popping in to read all your posts and I shall do some posting over the weekend.
Please have a look at the Breaking News section on bc.org, where there is lots of information about vitamin D. Read it all and then look at the section Low Vitamin D Levels. Let me know what you think about all this.
The link is:
http://www.breastcancer.org/research-news/20130107
It is a wild, windy and wet day here. A typical English day!
Best wishes.
Sylvia
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Hello Lolalee
It was good to have another person posting from Australia.
Bernie will keep us all laughing.
Welcome to our thread.
Sylvia xxxx
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Hello everyone.
I thought you might be interested in the following two links. Please look at them and let me know what you think.
Lower Dose of Radiation Therapy Just as Good as Current Regimen for Early-Stage Breast Cancer.
http://www.breastcancer.org/research-news/20130108
MarginProbe System Approved by FDA
http://www.breastcancer.org/research-news/20130107-2
Have a good weekend.
Sylvia
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Hi Sylvia, thank you for the welcome. I have been checking this site for a little while, always on the lookout for Bernie's latest light hearted contribution. Always a pleasure to read.
It seems that every second person these days has a deficiency of Vit D, myself included. I have been taking supplements for the last six months. Hope it works!
Best Lola.
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Hello everyone.
I have just read the information about the probe for breast cancer that will make it easier for consultants to know how wide the lumpectomy margins need to be and help to know that all cancerous tissue has been removed during the lumpectomy. This is progress because, at the moment, after a lumpectomy, if there are not clear margins, some women have to go back for a second lumpectomy to remove cancerous cells.
A friend of mine had to go through this and she told me that had she not got clear margins after the two lumpectomies, she would not have been allowed a third one, but would have had to have a mastectomy.
There is quite a bit of discussing on these threads about mastectomies, single or bilateral, and especially prophylactic mastectomies.
As I have said on this thread before, and it is only my own personal view, that I would always have opted for a mastectomy of my right breast, even if I had had a choice. A mastectomy made me feel reassured that nothing had been left in my breast.
Given the discussions, I have been wondering whether, had I been asked, I would have chosen to have the left breast removed as well, prophylactically. I do not think I would have been able to do this and have a healthy breast removed. Had I been tested genetically, and been told I was BRCA1 or BRCA2 positive, I would probably have felt differently, and gone ahead for peace of mind.
I do admire all these young women who are opting to have both breast removed, but it is a huge decision to make.
Best wishes.
Sylvia
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Hello everyone.
I am just popping in again to say I have now read the information about low dose radiation possibly being just as effective as high dose.
I must say I found this information very interesting and quite easy to read. It also enabled me to work out where my own radiotherapy regime back in 2006 fitted in to everything. I now know that radiotherapy units are measured as Grays and that I had 40 Grays over three weeks, five days a week, and this number 40 included boosters that my oncologist had ordered. The average number of Grays per session seems to be 2. Mine was obviously lower than this.
I still do not really know how many sessions are worked out for a patient by the oncologist. It seems to be 3, 5 or 7 weeks.
It would be interesting to hear from of those of you going through radiotherapy about what regime you are on.
It would also be interesting to know how many of you are having just lumpectomies and radiotherapy with no chemothrapy.
Thinking of you all.
Sylvia
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