Calling all triple negative breast cancer patients in the UK
Comments
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Hello linali
Thank you for your post. I was so sorry to hear that you are having such a bad time. I was so sorry to hear that you are having trouble over benefits. I do hope that BernieEllen may be able to help you. If you read my post to her you will understand the system here. Do you have anything like the Citizens Advice Bureau that you can go to for some help? If you are unable to work there must be some way that you can get financial help. We have something here called Incapacity Benefit, soon to be changed to Employment Support Allowance for those who are unable to work due to ill health. Do you have anything similar? In fact, here you can get both Disability Living Allowance and Incapacity Benefit at the same time. Neither of these is means tested. Do you not have any cancer charities, such as our MacMillan Nurses, who can offer financial support?I shall be so glad for you when Thursday arrives and you can get that rash and pain sorted out. The swelling sounds as though it is lymphoedema, which can come on at any time. All that can be treated.
I do hope you are getting support from your husband and family with what you have been through. It is not two years since you were diagnosed, so everything will still be pretty raw.
I also hope that you are getting help with your son and his Aspergers.
There is no point in trying to return to work before you are ready and it does not seem to me that you are ready, either physically or psychologically to return to work. You need to get your GP, your medical team and anyone else you can think of involved to help you through all of this. Can your local support centre help you at all?
I was very sorry to hear that your little grandson has not been at all well and happy for you that he has started to improve. I hope he is doing much better today.
At the present time your priority is to yourself. You need to put yourself forward as number one and concentrate on your own needs. There is a profile of someone who gets breast cancer and they say it is often the selfless person who is there for everybody else and that the person has to learn to say NO. I know that I fir that profile and I still find it hard to say no, although I have learned how to pull back when my body tells me I must.
I cannot see why your surgeon will not be prepared to say that you are not fit for work for the next twelve months. Cancer treatment takes a heavy toll on you and it affects everybody differently. I do not know your age, but you are the only one who can read your own body. Nobody can generalise for you and nobody can tell you how you should be feeling.
Please take care of yourself. Best wishes.
Sylvia0 -
Hello again Bernie Ellen,
Thank you for a really great quote. It is definitely one to follow.
Best Wishes, Sylvia.
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Hello christina1961
I just wanted to say that I agree with you that no one on this thread should ever feel bad about asking for support. That is what the thread is all about. I agree with you that bak94 is always very supportive and her kindness is reflected in her posts. I know that we all admire her and that we shall be here for her as she needs us.I am glad you mentioned about the port. It looks as though with your sister it is being kept in as a precautionary measure. Does she have to have it flushed out regularly? How long ago was your sister diagnosed? I do hope she is well.
Christina, I was glad to know that your breast surgeon has told you to wait two years following your mastectomy before doing any kind of reconstruction. I think that is very wise. I think we need to encourage everyone reading this thread to report to their medical team anything that does not seem right to them. If you feel there is something that is not quite normal, better to get it checked rather than worrying about it day after day.
I agree with you that bak94 has done so well, especially having gone through treatment twice and with a positive attitude.
I hope you are having a good Sunday and not thinking about these threads.
Best wishes
Sylvia0 -
Hello LintRollerDerby (Betty)
Thank you for your posts. I am glad that you have come to say hello. There are some really warm, intelligent and informed women on this thread, not to mention supportive. There is a whole lot of information on the forty-odd pages that make up this thread, and they can take you right through your cancer treatment and beyond. We have covered so much ground and a lot of it in depth. I am sure it will make the journey easier for all those going through breast cancer treatment, even if they are not triple negative.Betty, thank you for your kind words to all the TN sisters in the UK and we send all our warmest thoughts to all those TNs in the US.
Thank you for your kind words. I am feeling so much better now, but the bug doing the rounds over here is really nasty. Is it doing the rounds across the pond?
I do hope you are making great progress and feeling as well as can be expected. It will soon be a year since your diagnosis and you have done a good part of the journey. Keep looking forward, Betty.
To everyone else, I have spent quite a long time on the thread today so I am going to take a break now. I do hope you are all having a good Sunday and are thinking of anything but breast cancer.
Warm thoughts to all of you.
Sylvia0 -
Thank you Sylvia, you are very helpful. My MO called me on Saturday! Scared me, but he was just letting me know that my eye allergy was actually a common staph infection. It has cleared u with the drops he gave me. We had a nice chat. He said no more chemo for me, but the zometa every 3 months, and it is for preventative measures. He puts most of his breast cancer patients on it. My doctors all now seem to agree that I am technically a stage 4, because of where I have a positive node, but because it is still considered local, they say they see me more as a stage 3. I am in a grey area, as the node is on the border of being stage 3 or 4. I have not asked if my stats fall more into which stage, maybe I am too scared to ask. He wants the port also for blood draws, since I have nodes out on both sides, he wants to take blood often to keep an eye on me, and does not want to risk lymphedema.
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Bak, Christina and Mccrimmon, thanks for suggestions to help with my allergy...hay fever, or not whatever it is. Since I last came in here the antihistamine tabs recommended by my doc have started to work (they are called Rinialer, one to be taken every 24 hours), and they are certainly helping a lot, and I don't seem to be suffering any side effects. I seem to get worse outside the house, when I get an irritating tickle at the back of my throat, so I suppose it is hay fever. The weird thing about allergies is that they can pounce on you when you least expect them..I only started getting this allergic reaction about a couple of years ago.
Sylvia, very glad to read that you're feeling better. I had my onc visit yesterday, and he seemed pleased with the progress made, and feels he can now see me in 6 months time...glad and again not by this, as going to him somehow feels like a kind of insurance against recurrence. I asked him about Metformin, but apparently he hasn't read up anything about it...he said he'll let me know, but I don't hold out much hope of being given it without scientific proof of its usefulness against TNBC. My onc did however confirm that you were right Sylvia, in saying that I can start counting form my diagnoses, which is great as I can now say that I'm starting my second year!
Hi to all new people on this thread...sorry to hear things are so tough for you financially Linali, and I really hope you can find some kind of way to access funds...
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Maria-Our diagnoses was pretty close, my mammo was March 31rst, call the first week of April. My MO said that since chemo messes with the immune system,so this can affect allergies too.
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Sylvia-Didn't you say you had an interest in Sartre? I am having a hard time with Existentialism! I don't think philosophy is my thing! I am writing a 3 page paper on something I don't really get yet!
Edited to say that this way of thought is a little depressing for me! That our existence doesn't really have any meaning, other than what we make of it while we are here! My paper is coming along ok! I am not sure I understand it all, but I am writing how I see it!
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Thanks to everyone for your support. I think that everything happened at once and despite attending mindfulness classes and a psychologist cannot stop that instant reaction of panic.
Yesterday was a fabulous day and last night I went to a fundraiser for the cancer centre. How wonderful we....the survivors looked, men and women all glammed up. What a positive and warm feeling you get to be amongst them. One of the founders is 19 yrs diagnosed on 1 april and is a vivacious and positive woman who admits honestly that she too still has her wobbly days.
I spoke to my beautiful little grandson on the phone and he is much improved which is such a relief.
Today I can look at things more logically, thanks to your supportive posts, in particular berniellen, perhaps the two glasses of red wine I had last night helped too!
I am waiting for my sister to send me an article from the new scientist that talks about the use of a combination of drugs, avastin being one in trials on triple negative and other cancers. I wonder has any one else seen this?
I feel that I am lucky to have found all the support, it helps so much just to talk or even just to see your worries and fears in writing.
I must remember that life is there to be lived, to look forward and whenever we can to smile and think of all that is beautiful. All my spring bulbs are starting to flower and theres nothing more calming than walking through the garden, early in the morning with my little cat Luna.
Thank you
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Hello Liali, so happy to hear that you feeling more positive and great news about your grandson.
I love my garden and find great peace when I'm outside.
Here for you anytime, lots of love
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Hello everyone
MariaI was glad to know that all is going well with you. Live your life to the full now and forget about breast cancer for the next six months. We all get nervous when it comes to check ups.
I do not think it is prudent for any of us to just on the metformin bandwaggon. After all it is an anti-diabetic drug.
I feel it is much easier to count breast cancer from the date of diagnosis. Congratulations, Maria, on being one year out.
Bak94 (Brenda)
Do not let your philosophy course cause you any stress. Like a lot of subjects I think there is a lot of jargon. I did not study the philosophy or Sartre as such, but studied him as part of my 20th century French Literature course when doing French Honours. It is a long time ago now. We had to read one of his novels, his first one I think, La Nausée (Nausea). You would probably find it interesting. It is part of a trilogy of novels, known as The Road to Freedom. As for his major philosophical work, Being and Nothingness, I have never been able to read it. Put simply, the existential philosophy is that life has no meaning and that it is up to each individual to give it meaning. I do not find it depressing to think that life is meaningless. What possible purpose could we have here? We are not here with a pre-ordained purpose.
I am glad to know that your paper is coming along. Just write as you understand it. Have you been learning about existentialist anguish? I remember studying about that.
Linali
I was glad to know that you are feeling much better and that you had a good day. I think that we all have ups and downs throughout our existence and that we just have to learn to take the rough with the smooth. When we get up in the morning none of us knows what the day will bring. One small incident or perhaps one small word can set the tone for the day. Some days can have everything going right and some days can have everything going wrong.
I am sure you will find people on the thread that have been on Avastin. I think research has been somewhat inconclusive about Avastin.
I hope you will have a good week and if you have off days take pleasure in small things such as all the bursts of spring colours that we are experiencing. Take joy in your grandson.
BernieEllen
Thank you for your good support of linali and thank you for all the great information and wisdom that you bring to this thread.
Hello to everybody. I hope you are all having a good week.
Best wishes
Sylvia0 -
Sylvia-Thank you for your input. I find all this fascinating, as I do not have any strong belief system. I do not want to believe that existentialism is how it is but it does seem to make sense. It explains why bad things like cancer happen and war and all other bad things. If there were a divine being with good in mind, why would all these bad things be allowed to happen, all the suffering and such. I do agree with we each have a freedom of choice and we are responsible for what we chose. I think sometimes there is just too much blaming going on.
My husband who has a strong faith would say it all has meaning, bad things happen to teach us something, to make us appreciate the good. I hope I am not offending anyone here, I am just trying to understand my philosophy class.
I have heard of those novels and think I will try to read some. It certainly is not an easy read for me! The wording of what I have read so far is different to what I am used to and it takes reading things a couple of times to get at the meaning of it.
Existentialist angst? I do think that is the story of my life! The anxiety of fearing nothingness and a meaningless life and feeling responsible for all that I do. I have studied more the atheist view of existentialism, I now want to study the more theological view of it, as I don't understand that at all. To me, it would seem to contradict having a divine being.
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linali-I had ac followed by abraxane/avastin. I had a complete response. I know there is now some scary info on avastin that I do not really understand, like it causing more stem cells to spread? Sounds like you may have read up on it. So far it seems like it has worked for me. At first my mo was going to continue me on avastin after my bmx, but he now says since I had a complete response he is not going to have me take it, plus I am not even sure if insurance will pay for it now.
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Sylvia-I turned in my paper and he graded it right away. He gave me 30 out of 30!
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Congratulations bak
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Hello bak94 (Brenda).
Thank you for your post. I was glad to know that you are finding existentialism very interesting. I really enjoyed all the novels etc. that I read by Sartre many years ago. I think that existentialism is a good philosophy to live by. Give meaning to your own life and do not worry about the rest. I tend not to get involved with religious people who live by their faith. There is no point. I cannot believe that in today's world people can believe in the literal meaning of the bible. Even if there were a god, he is certainly not benevolent and I do not accept this feeble idea of having been given "freewill". I think religion came about with primitive man to explain phenomena that he did not understand. We should be way past all that by now.
I do not understand the concept of existentialism from a theological view of it. That seems to be nonsense to me.
Congratulations Brenda on getting 30 out of 30. You cannot do better than that. It is obvious that you really got to grips with existentialism. Give yourself a pat on the back and be happy with the existential view of life. Enjoy life now and forget all that nonsense about life will be better in the next life. You might be interested to know that Sartre is famous for saying "Hell is other people" (L'enfer c'est les autres). Now have a good think about that!
To everyone, I hope you are all having a good week.
Here in the UK we are once again getting a lot of publicity about low dose aspirin taken daily as a preventive for certain cancers and also for preventing the spread of cancer. I do not know what to think. The experts keep coming up with all different theories.
Best wishes to you all.
Sylvia0 -
Well, Bak, existential angst or not, you still scored full marks which is brilliant! Yes, we were diagnosed pretty much at the same time (although I know yours wasn't the first time), and I've sometimes wondered whether my allergic rhinitis might be connected in some weird way...the thing is it couldn't just be low resistance as a result of chemo, as my allergy symptoms started a good 6 months pre diagnoses... could my immune system have been weak because of the existence of my tumour I wonder?
Hi Sylvia, hope you're back to normal. I think a lot of the publicity we read in the papers connected to cancer prevention, new treatments, etc, is just that: publicity ... a way to increase newspaper sales. Sickness, its prevention. potential cures, new fad treatments, like celebrity gossip and sports, sells. And what might be a small scale trial which, though interesting, would not be taken on board by the medical profession as it's too early yet to confirm its efficacy, is swooped on by journalists because this kind of information SELLS. I find it hard to imagine that low dose aspirin on its own, could prevent a cancer, or the spread of an already existing cancer. Some time ago I read the excellent book on cancer called 'The Emperor of all Maladies', possibly recommended by you, tho' I might be wrong, and the one clear impression I was left with is quite how complicated a disease cancer is, how much there is left for scientists to learn, how differentlly different cells react, as well as how unpredictably. We are still a very long way away from a 'cure'.
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Hello Maria_Malta
I think you make a good point about your allergies and a weakened immune system. We do not know what is going on with our bodies as cells within us are turning malignant and eventually forming a tumour. It is probably a very complicated process.I am more or less back to normal, but this bug has left me feeling very weak.
I do agree with you that we get all these headlines in the paper about cancer, and especially breast cancer, in order to sell papers.
I agree with you about the latest publicity over aspirin and what it can do for cancer. I doubt very much that we shall ever have a pill that we can swallow to prevent cancer from forming or spreading. I think the book The Emperor of all Maladies says it all. I do remember promoting it on this thread because I was so impressed with it. I do not think, either, that metformin can be the magic cure, but then I am not a doctor. I do think, like you, that we are a very long way from a "cure". There are too many different cancers anyway for a one-size fits all cure.
What I do hope for is a move away from chemotherapy and radiotherapy which I feel are so devastating and barbaric and probably leave patients to face major health problems post-treatment. From what I have been reading there are improvements in radiotherapy that do not have such bad side effects. In this country, under the National Health system, the problem will always be whether patients get access to the new and improved treatments. They will always be accessible privately.
Best wishes
Sylvia0 -
Hello everybody
I just wanted to say that I hope you have all had a good week.To bak94, I hope your radiotherapy is fast coming to an end.
To linali, I hope you had good news this week from your consultant.
To christina1961, I hope you are well and that you are doing well on Tamoxifen.
To mccrimmon324 (Heather), I hope you are having a really good time in Europe.
To BernieEllen, I hope all is well and that you are enjoying the beginnings of spring.
To Karen3 and sam52, I hope you are both well, that the teaching is going well and that you will enjoy your Easter break, which is not far off.
Have a good weekend and always try to accentuate the positive aspects of your days and not the negative. You are welcome to share with us any happy moments you have had this week and post for support if you have had some moments that have made you feel in low spirits.
Thinking of you all.
Sylvia0 -
Hello Sylvia
Thank you for always thinking about me (and all the others!)
I am so glad you are feeling better.
I have just been so busy lately.....the PM from me is still well overdue - I 'm sorry.I will get there soon...hopefully...there is a lot I want to tell you.
Just wanted to let you know I have started yet another thread 'parathyroid disease and bc' because I keep on seeing posts from people who have had both. So far, only one reply and that was from someone who had thyroid disease!
Hope you have a great weekend - it's amazingly warm and sunny in London.
With love,
Sam
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Hello LintRollerDerby (Betty)
I hope all is well with you, as I have not seen you posting in a while.
Hello sam52
Thank you for your post. I am too tired to post today but I hope to post tomorrow.
Best wishes to all.
Sylvia
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Hi Sylvia thanks for your concern for all of us. I hope that today you are feeling less tired and able to enjoy the fine weather that is promised for the weekend.
My visit to consultant has left me with more questions and feeling confused. People had encouraged me to change cancer centres, and I'm beginning to realise they maybe right.
Firstly I wouldn't have seen her but my husband insisted that this was 3rd time and not seen her. Think the doc little offended. Secondly I explained all different worries, rash, pain in breast and neck and shoulder, plus pain and hotness under arm armpit and side of breast and he tried to reassure me by saying that I was only grade 1 and 1 small tumour, so I had to correct him and tell him 3 and that a reoccurrance isnt necessarily a lump or puckering. Are there any docs that are familiar with triple negative, I'm beginning to wonder.
I did see consult who says pain is from radiotherapy and refered me to pain specialist. Told her what physio said but thinks weakness and pain under arm is from new exercises. I do Tai Chi so shouldnt be that weak! I asked re rash and she agreed with my gp that the only way I would have got to see dermatologist was by paying, which I can't afford to do for many more visits. I am covered by insurance for biopsy so going ahead with that.Would have thought that radiologist would be involved.
I had equalisation surgery in oct 2011 and she feels that one breast is bigger and different shape cos of swelling from rads and said that she may do more surgery if I want. So feeling confused right now.
I worry about all the shoulder pain cos my friend that died was doing fine after breast cancer, then had bad pain in shoulder and it was reoccurrence. I always felt kind of envious cos she was on Tamoxifen then another similar drug and her team brought her in for scans etc whenever she had doubts and worries. So you never can tell and I miss her.
Wow as my dad would have said " what a moaning minnie " .Just read through this!
Well on a better note my beautiful little man is over his bug and running and shouting as usual.
I am showering then setting off for town to pick up papers, apple puffs and a baguette for hubby who is recovering from the flu bug. Have prepped chicken for thai curry for dinner this evening and walked through garden to check how many bulbs flowering. Yellow tulips and azaleas looking wonderful.
At 11 I am off to the support centre to Tai Chi, then some lunch followed by the first of the new art classes. Still looking for inspiration and I am new to painting. There was a lovely sunrise this morning so that would be great if I could capture that.
So thanks to you all on this thread and hope that you are doing well.Thanks BernieEllen.
Dont forget the clocks
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Morning Linal. It's going to be a lovely day, the sun is already shining.
You are not moaning, you are right to be concerned and the doctors must take you seriously. I have pain and swelling from the radiation and my doctor checks me regularly. When i had pain in my leg they immediatly sent me for a bone scan. At least I know I have arthritis now.
I hope you enjoy your day - the support centre sounds like exactly what you need.
Lots of love
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Hello sam52
Thank you for your post.I know you have a very busy life, so do not worry if you do not have time to send me a PM.
I was glad to know that you have started another thread about parathyroid disease and breast cancer, because I remain convinced that there is a connection. What we need to know is which one comes first or if there is another factor that has caused both. My consultant definitely told me that my parathyroid problem pre-dated the breast cancer and that she thought I had had the parathyroid problem for some time. The strange thing is I do not think it caused me any problems with my bones. I am convinced that I developed osteoporosis as a result of my breast cancer treatment.
It looks as though we shall have a nice weekend here in Exmouth, but the temperature will be only 13C. We are still getting a lot of heavy mists.
The grounds here are gradually coming to life and there is a definite feel that winter is coming to an end.
I shall post on your thread later on. I am still trying to catch up with everything. I went to the doctors yesterday and got her to examine me. All is clear except for the throat.
Love
Sylvia0 -
Hello linali
Thank you for your post. I am feeling much better today and trying to catch up with everything, as I like to be organised.I am concerned that you do not seem to be getting peace of mind from your cancer centre and that is not acceptable. When you you write about your cancer centre, are you talking about a cancer clinic in a hospital? Are you having regular check ups, alternating between your breast cancer surgeon and your oncologist? This is what happens here.
I get the impression that the situation appears to be a bit muddled at your cancer centre. When you go to your oncologist for a check up, you may not always see him. You may see one of his registrars. I know that even when I was going through chemotherapy and having check ups, after the first couple of visits with my oncologist, I saw her registrars. However, if you particularly want to see your oncologist you can request it.
If you are not happy where you are going, if I were you then I would change it. I get the impression that the person you saw may leave something to be desired. If it were me, I would not allow him to be somewhat nonchalant about the rash. My oncologist told me that the first sign of any problem needing attention would be a rash along the line of the mastectomy scar. I am always looking for signs of rash. I was also told that when you run your hand across the area where a breast has been removed you should be feeling for smoothness and any roughness could be a problem. I hope he is aware of triple negative and how aggressive this type of breast cancer can be and that they are nearly always Grade 3. There is nothing to stop you informing him about triple negative.
As I said before, I cannot understand why you had to go and see a dermatologist. Your oncologist and your breast cancer consultant should be dealing with any problems relating to your breast cancer. You should not have to bring in anyone else.
I do hope you will be able to sort this out. You must not feel intimidated by any medical person. This is your life and you must make sure that they deal with these problems that are causing you distress.
I am sure you must miss your friend who died of breast cancer, but for the moment concentrate on getting your health problems resolved.
I am one of those who is certainly glad not to be on Tamoxifen or any of the other awful drugs such as Arimidex, that are given to women after treatment for hormonal breast cancer. I am also glad that I have not had to have Herceptin. At least after treatment for triple negative you can be drug free and try to get yourself fit and strong again.
I was glad to know that you are carrying on with the normal routine of daily life. Keeping busy is a very good thing. Take pleasure in the spring bulbs and preparing a nice supper.
I hope you enjoy your time at the support centre and that you get some inspiration for your new art classes. Enjoy sunrises ans sunsets, even if you cannot capture them on canvas.
Have a good weekend and make sure you get that rash sorted out.
I shall not forget the clocks.
Best wishes
Sylvia0 -
Hello everyone
Here in the UK we started the week with all the publicity about aspirin and its ability to prevent and cure cancer.We have ended the week with publicity about a blood test that is able to detect signs in the blood indicative of cancer forming five years before it actually does. Apparently, when cancer cells start to form in the body, they throw out antigens and in response to this and to fight it, the immune system sends out antibodies. It appears that in Scotland they are going to have a massive trial of about ten thousand smokers and use this testing to detect these antibodies and antigens five years before cancer of the lungs is diagnosed. The hope is that these blood tests will quickly be used for breast cancer, prostate cancer, etc. It is stated that with this blood test treatment can start very early and the death rates will go down, not to mention the costs of treatment, such as chemotherapy, which will not be necessary.
There was an article in yesterday's Times newspaper if you are interested in reading more details.
Have any of you read any information about this? What do you think? I am puzzled about what kind of treatment can be given five years before a visible tumour appears.
Best wishes
Sylvia0 -
Good question Sylvia...precisely what treatment would be given before an actual tumour appeared.... for eg how would doctors know WHERE it's going to appear?
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Hello everyone again
I have just received my latest newsletter form Chris Woollams at CANCERactive. I do hope that some of you, at least, are receiving these e-mails, because they are all so important and contain a lot of useful information.Homoeopathy is one topic that is mentioned and it appears there is evidence to support its use with cancer. Apparently, for all the details, you need to have a look at the magazine "What Doctors Don't Tell You".
I do not need convincing about homoeopathy. I received homoeopathic treatment at the Royal Bristol Hospital from the time I was diagnosed with breast cancer in June 2005, all through my conventional treatment until about 2008/9. With each conventional treatment homoeopathic back up and I was not that ill during all my treatment for breast cancer. For quite a few years I regularly had oral Iscador, which is a cancer fighter and an immune booster, derived from mistletoe. I would have loved to return to the Iscador after a break, but the PTC would not fund it. I had homoeopathic back up with chemotherapy, surgery and radiotherapy, as well as treatment for anxiety. I had an excellent doctor there and was referred to her by my own breast surgeon consultant.
There is also mention about research with sodium bicarbonate and its ability to stop metastases. Sodium bicarbonate will apparently help to make a body more alkaline and I am sure we have all read about the need to have an alkaline body more than an acidic one. 2009 research shows that when people with cancer drink bicarbonate of soda, it apparently stops new metastatic activity.
There is mention about the harmful effects of screening mammograms. "Screening mammograms do more harm than good" - The Nordic Cochrane Centre.
There is too much detail for me to show everything here. If you are interested you will read it up for yourselves.
That is all for today.
Sylvia0 -
Hello Sylvia
I have recently been diagnosed with Triple Negative Breast Cancer so this is my first time on your Forum. Until my diagnosis I hadn't heard about TNBC so it was good to come across other people with the same diagnosis. The internet articles I have read seem to be mostly doom and gloom and have made me feel quite alarmed.
Just to give a bit of background information. I had breast cancer just over 13 years ago, in December 1998. It was a 7mm tumour, Grade II, ER positive. No HER2 status given (I don't think tests were done then). I had a mastectomy without reconstruction and 25 glands removed but all were clear. I didn't have radiotherapy or chemotherapy so I was fairly lucky. I took Tamoxifen for 5 years. I was 41 years old when first diagnosed.
I am now 54 and it has been about 7 months since my last period. I discovered another lump on 6 Feb this year in my remaining breast. It seemed to have come from nowhere, I couldn't believe it! I went to my GP the same day and, in light of my history, she sent a fax off to the hospital later that day. My first hospital appointment was the following week when an examination and mammogram confirmed a lump. This was then confirmed by an Ultra-sound and I also had a needle biopsy. The ultra-sound didn't pick anything up in my armpit which, I was told, reduced the likelihood of it being in my nodes from 40% to 20%. I was told the lump was suspicious!
At the following appointment cancer was confirmed. A tumour between 3 and 4 cm, grade II. The ER and HER results were not back at that stage. In the meantime, even though I was offered a lumpectomy I chose to have another mastectomy. I went back to the hospital a week later to see the breast nurse and was told the ER and HER results had come back negative and that the tumour had been changed to grade III. I had my mastectomy on 13th March, 5 weeks after I first discovered the lump and 4 or 5 nodes removed at the same time. I am now nearly 2 weeks post-op and still recovering from surgery.
I will get my full results on 29th March. Up to now no one has mentioned 'Triple Negative' to me. I found TN on the internet and I must say it came as a shock, especially since my last cancer was pretty straight forward. I hadn't realised that every cancer can be so different.
I have only read the first few pages of this Forum and noticed that you mentioned you were keen to hear from other older women, as TN seems to affect predominantly younger ones. Like you, people tell me I look much younger than my age, even my Consultant! I am reasonably fit, slightly overweight and my diet is not the most healthy but not the most unhealthy either. Since my first cancer I have drunk Soya milk in my tea and tried to avoid most dairy products, apart from organic Yoghurt. I have had a lot of stress over the last few years and find myself suffering with anxiety a lot now, so much so that my blood pressure was shooting up during my recent hospital stay! I believe I have what is called General Anxiety Disorder and need to do something to get to grips with it, especially in light of what lies ahead.
Although people tell you that breast cancer treatment has really progressed, this seems to be one area that has lagged behind and, from what I can gather, the treatments seem to be hit and miss at the moment.
You are doing a great job on this Forum and it's good to hear the experiences of all the other people who have contributed. Lets hope science comes up with a more targeted and effective treatment soon. I will keep you posted.
Karen
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Hi sylvia I must check out canceractive there seem to be alot of interesting stuff .
Just to clarify the system that they use at the cancer centre in my regional hospital:-
You are firstly referred to a symptomatic breast clinic, then mammo, biopsy,then for me surgery, chemo and then radiotherapy. I was discharged from the oncologist 2 weeks after my last chemo and will not see him again. I am only under the care of my surgeon who is a breast surgeon. I was told that I would have 6 month appts with yearly mammos. I have to go to my gp for after care, I suppose you'd call it. It is only because I kept going to my gp with pain that he referred me back to the surgeon and he had been treating the rash for ages with different creams. It was the breast care nurse at my check up after equalisation surgery who suggested that I should go to dermatologist and go for physio because of pain and weakness. I saw the registrar at that appt and she wasn't too familiar with TN. Thank goodness for the breast care nurses.
The art class was postponed because the tutors uncle died, but I truly believe in fate. We stayed after tai chi for coffee and a chat and two people arrived who had lots of questions and worries, so we were able to sit with them and talk because we had no class to go to. What fabulous women and hopefully we were able to ease their worries and they now know that there is a safe and friendly place with cake that is available to them. It put my problems into prospective.
Just watching THE VOICE and I wish that I could sing..... what a wonderful way to express yourself!
Must start listening to music again. I always used to do Sunday dinner and baking dancing around the kitchen to the golden oldies program.
Brings back memories of music festivals,at the biggest one I saw Jimi Hendrix, Melanie, John Sebastian and the Who.Would love to go to one again but getting too old for the porto loos now!
Well so much for my younger days. Love and peace to you all x
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