Calling all triple negative breast cancer patients in the UK
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Hello linali (Lindsay) and Michael,
It was nice to see you both back on the thread and offering support to Sue. She really needs that at this difficult time.
Lindsay, I hope you will let us know how your life is going in Ireland.
Michael, I hope you had a good time in Chelmsford. Where shall I find your videos. They are not with your post.
It is one of those really depressing days here in Exmouth. The kind when you have to put the light on very early in the day. I followed the forecast for Northern Ireland this morning so I know you are getting plenty of rain again.
All the news is very depressing and I am very concerned about the future of the NHS. If only those with plenty of money would start a fund 'Save our NHS' and put some of their wealth into it to raise the £30 billion needed.
Best wishes to both of you.
Sylvia
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Hello Michael
Thank you so much for those short videos. Chelmsford still looks good to me and I was amazed at how quiet it was, but I can see it was raining!!
Chelmsford and Exeter were my two favourite towns but I am not so keen on Exeter now. It has grown too big and is too crowded. I was there on Sunday and it was so busy. There is a whole new part just off the High Street called Princesshay. It used to be quite small and run parallel to the High Street, but it was all renovated a few years ago and is now full of major chains and lots of eateries with everyone eating alfresco. It always amazes me about the English that they can sit outside in cold and rain, as if they were in the south of Spain!
I do miss Chelmsford library. I had a good relationship with the staff there and they had up to date French books. It could have changed now in this time of cuts everywhere.
I was wondering, with you living in Northern Ireland, and your visits to Brentwood and Chelmsford, where you feel the most at home? Because of the way my life has evolved, I often feel that I have no roots anywhere. It is a strange feeling.
Sending you best wishes.
Sylvia
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Hi all,
Thought I'd put a post here. We're based in Hertfordshire. My wife has been diagnosed with TNBC, 1.5 x 2.3cm tumour, no nodes. Tumour had medullary-like features. She is 33 and also at time of writing just coming up to 22 weeks pregnant with our second child.
Had her first chemo today, she has already had a MX. she is starting to feel ill now. Wish I was doing it for her, infact I wish I was the one facing this whole dam thing.
Personally having a down day today, but staying strong for my darling.
Good to hear the positives on here. I work in medical research and really want to turn my attention to this. Can't believe we can land a probe on a comet from zillions of miles away at 35000mph but can't cure this shite.
Love and prayers to you all
Xxx
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Hello breastcancerhusband,
I have just read your post and would like to welcome you to our thread. None of us wants to be here but when we find ourselves here we try to give lots of support to one another.
I was sorry to read that your wife has been diagnosed with breast cancer with triple negative receptors. Concentrate on the positive in all of this and the fact that the tumour is quite small and that no nodes are affected. Your wife has already got through one part of this journey in that she has had a mastectomy.
It must be doubly difficult for both of you in that she is twenty two weeks pregnant with your second child. We have had two women on this thread who have been pregnant and diagnosed with breast cancer and have both delivered healthy babies and come through all of their treatment. One of these women was Mumtobe (Carol) from Ireland. She did some of her treatment, had the baby an then did some more. She has not posted for sometime but her last posts were all full of the joys of living and how she was getting on with her normal life and enjoying her baby, Emma. You might want to look at her posts. I know that she posted quite a bit.
At the moment we have Marymargarethope from the UK who has quite recently finished her treatment and had a baby while on it. I do hope she will read this post and post to you to give you reassurance that you and your wife can get through this. I know how helpful her husband has been to her through all this.
It is hard for husbands and partners to see their wives going through all this but it is important for them to be strong and optimistic. My own husband saw me through my treatment with great strength and I could not have done it alone.
We all find that chemotherapy is the most challenging part of our cancer journey. It is the longest part and side effects can build up over the treatment. Our reaction to chemotherapy is very individual so do not think that your wife will necessarily have the same side effects as someone else. The most common side effect seems to be fatigue and a patient just has to get a lot of rest and not try to carry on with their normal routine if they do not feel up to it.
I was sorry to read that your wife is starting to feel ill after her first chemotherapy. What kind of symptoms is she experiencing? There is a lot that can be done to alleviate some of the side effects. It is important for her to keep well hydrated with plenty of water or herbal teas.
What chemotherapy drugs is she having and what regimen? Some women have a dose every three weeks and some have lower doses every week or every two weeks. I remember Mumtobe had some chemotherapy on a weekly basis and she found it a lot easier than treatment every three weeks. Do not be shy about asking the oncologist questions and making sure everything is done for your wife's best benefit.
I was sorry to read that you are having a down day. This is quite common for carers and patients, but somehow everyone has to stay strong. If you need to talk please come here. We do have another man on this thread (chatterbox, Michael) who is a strong poster and who cared for his wife through breast cancer. He will understand what you are going through.
I was interested to read that your wife's tumour had medullary-like features. Does this make any difference to her chemotherapy treatment? I know that the most common type of breast cancer is known as invasive ductal carcinoma (IDC) and this is used apparently to describe breast cancer of no special type, but there are other breast cancers that are not so common. On this thread we have had women with metaplastic breast cancer, lobular breast cancer, and inflammatory breast cancer, all with triple negative receptors. Is there any particular characteristic of medullary type breast cancer?
I was interested to know that you work in medical research. What exactly are you doing at the present time? Like you, we all on here get frustrated that so far there is no cure with this disease. I do not think there will ever be a magic bullet.
I also think cancer is very political and that lots of money is being made out of it.
Since your wife is young and TNBC does seem to affect mainly young women, or a higher proportion of young women, I was wondering whether she has been tested for the BRCA1 or BRCA2 genes and whether there is much breast cancer in her family.
I do hope you are feeling a bit better today. November is a dull old month and sadly lacking in sunshine and it can make us feel a bit low.
Thinking of you and your wife and sending all my comfort to you.
Fond thoughts.
Sylvia
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Hello everyone,
I am just popping in to say that today, November 20th, I have reached exactly 9 years and 5 months since diagnosis. I am posting this to encourage and motivate all of you. You can all do this. Remember to take care of yourselves, eat healthily, keep physically and mentally active and keep to your ideal weight.
Wishing everyone the very best.
Sylvia
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Hello mumtobe (Carol),
I was thinking about you today because of a post from a husband whose wife is expecting a baby and going through treatment for TNBC. I know you have not posted for a year, but if you are still looking it would be nice to hear from you to know all is still well and how baby Emma is progressing.
Best wishes.
Sylvia xxxx
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Hi Sylvia
I know that Chelmsford looked pretty wet in the videos but it was only very light rain, unless there had been downpours before I got there.
I feel much more at home in England, as I said to someone here, it feels like a warm blanket being wrapped around me when I get to England.
It is very warm here, for the time of year so big savings on heating bills...
Michael
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Hi breastcancerhusband
I am so sorry to hear of your wife's illness and that you are, naturally, under great stress. What hospital is your wife being treated at?
Best wishes
Michael
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Hello BreastCH,
Very sorry to hear about your wife's diagnosis and particularly during pregnancy too. It sounds positive in that she has no nodes affected and it's quite small, that does sound strange, but these are factors that have a very, very good outcome.
I was 31 weeks pregnant when diagnosed and baby came out the following week. My cancer is lobular so it does not present as a lump, more like a thickening so it was quite big when I started chemo (12cms eggh). I was wondering if they are going to take baby out a bit earlier? I know that can affect chemo as she will have to be off it for a while for a caesarean. I know how she is feeling.....my previous three pregnancies, I delivered and was over the moon. Baby four - I was on the ward looking at all the other mothers seeing how happy they were and how normal everything was for them and my world was falling apart. It was a really tough time but it sounds like you are a great husband and will get her through it. These first months after DX are the worst and while you should be enjoying this pregnancy and baby number one, but you have your mind on other things. But believe me, the feeling does pass and you become more positive and happy. I was diagnosed 6 months ago and I have to say, I feel that I have come out the other side now. I had chemo first to shrink the cancer and am due to have a MX December 17th, followed by radiation.
What chemo is she having? I am no Doctor but I have done my research as I am sure you two will probably be doing too as you are in the field of research anyway. My findings are that docetaxol is a very powerful chemo drug, it is not usually given to node negative but I would definitely ask for it. The long term prognosis for triple negatives is much higher/positive with four sessions of this. I am node positive with one sentinel node but it wasn't in my treatment plan, so I asked for it and they said it was a good idea ???? glad I did now as it has really worked for me. However it does have side affects.
Sylvia, as you know I have had my last chemo of docetaxol and I can't feel the thing anymore, Doctors are quite amazed as they never expected to get it less than 5cm and now it might well be gone. You know how obsessed I was with a complete pathological response and I am hoping it's happened!! If that's what it's done to the big one can you imagine what it's done to any little nasties? IT WAS 12CM!! Prayers have worked too though!
The nails on my toes and fingers are so painful and one nail is going to FALL OFF! It's horrible! But it will grow back, along with my hair, which is 1cm long now. This tiredness though has been the worst out of all the chemo's, I just can't seem to leave the sofa and have no energy for anything. I will rest until the weekend and then I need to start moving, I don't want to risk another infection before the op.
Hope you are well Sylvia.
BreastCH, we are here for you both, I am glad you found this because I wish I had someone to talk to who was pregnant at diagnosis, I felt so alone. Also, I have just had the test for the BRAC1 and 2 gene (there is a third identified gene now for BC which the genetics people found last week and I am being tested for that too) and am waiting for my results, is your wife going to be tested too?
Please keep in touch.
Marymargaret
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Dear Sylvia, Marymargaret and Michael
Thank you so much for your replies. Its amazing how the written words of people you've never met can touch you.
I had actually written a long reply to Sylvia and my PC crashed before posting! So here goes again - I do tend to ramble, so maybe pour some coca before reading this!
Firstly, I'm so sorry that the three of you are here. Its easy to think you're the only person going through this, but you realise this affects others too.
Michael, I don't know your story - but if you ever feel you need to chat please drop me a line.
Marymargaret - I can relate to a lot of what you've written, and I'm sure my wife would. This is our second child, a much wanted second child. My wife actually miscarried twice over the past 16ish months. When we saw a healthy baby on that 12 week scan back in September all we could think about was how happy we were. We both love this time of year, the dark cuddly nights and the build up to Christmas, and the blessing of a healthy pregnancy was going to make it even more special. Now we are facing a long winter. I really feel for you from what you said about being on a ward and watching other mothers. Well done for getting through this and great news they shrunk the tumour! I will be parying for you and your family as you approach surgery.
Sylvia - 9 years out!!! Thats so encouraging and hopeful. I've read lots of your posts and you provide so much help and encouragement, simply amazing, thank you. x
To answers your questions:
My wife is on FEC-taxol. Actually after time of posting yesterday she had a little rest and felt much better. She was very tired last night and said she felt "fuzzy" but she woke up this morning and was bouncing around! Infact as I left for work she was dealing with our 3 year old throwing a strop and we exchanged some banter about me looking like the one on chemo. I spoke with her at lunch time and apart from feeling a little tired, she is fine. Of course the pregnancy will be playing a part in that too. The FEC will be four 21 day cycles, then she will have 12 weekly doses of taxol. The plan is to do the FEC, hopefully 2 x taxol, C-section, 2 weeks recovery then the remaining 10 X Taxol. Marymargaret - I believe you are right about docetaxol being important. Docetaxol and taxol are both taxoids and have made a big difference to the prognosis of TNBC. Infact a very senior professor where I work made this comment to me last week and said that the taxoids have been a game changer for TNBC. I think the 12 weeks dosing helps with the side effects, but I have heard they can be bad with this class of drugs. My work are going to let me go part time to look after her during this time. Also its going to be the first few months with a new born, so I'll need to be at home. I do feel cheated with this. I was looking forward to those first few months of sleepless nights (strange I know!), but it will still be a happy time and that little baby (its a boy!) is going to help pull my wife through. He's already keeping her happy, everytime he moves her face lights up. I believe he's already looking after his mummy.
She is being treated at the Mount Vernon centre in Hertfordshire and they normally use Taxorete over 3 x 21 day cycles, but our oncologist is making an exception in our case to use weekly taxol. She may have radiotherpay, the team are not sure yet, she was node negative, but at any rate this won't be until the chemo and of course the birth are done!
And yep, she will be tested for mutations in BRCA 1 and 2. If she is carrying a faulty gene this also means my little girl will have to be tested at some point. This disease knows no bounds. No eveidence of cancer at all in her family!!
The medullary-like features do not affect the treatment. Some studies suggest that true-medullary tumours (which are rare 1-3%) have an excellent prognosis, others do not see any effect. The key points from the path report were the tumour was fleshy and creamy and had lots of lymphocytes and a predominant syncytial growth pattern. True medullary is hard to diagnose, and the NHS has actually dropped the term and favours medullary-like. Medullary tumours are normally grade 3 and triple negative, but don't behave like a TN. The white blood cells almost encase the tumour and prevent cells from escaping. The syncytial pattern (for want of a better way of explaning it) implies that the tumour is being "squashed." Under the microscope the pattern is not invasive, but rather the tumour is pushing against the surround tissue. We aren't sure how close to true-medullary the tumour is; quite a lot of recent studies have shown that having the lymphocyte invasion and syncytial pattern are good prognostic factors. Also, quite a lot of TN tumours have white blood cells infiltrate - but a few studies have shown that the more white blood cells the better the prognosis. Furthermore, the recent studies that have identified genes involved in TNBC tumours have highlighted a class of TN with the involvement of an immune response module, these generally have an excellent prognosis and the idea is that the immune system gets involved and keeps the tumour at bay and lots of white cells in the tumour are evidence of this process. Slyvia I would wager that your tumour had immune involvement, hence why it got so large, but failed to spread (i.e. just one lymph node) and also tumours related to this immune module also respond better to chemo. Its also why some women have large tumours and do very well, whereas some of the smaller tumours (T1a/b) can end up spreading very fast and the prognosis is not so good.
I work in haematology, but have always had an interest in cancer biology and actually last year began setting up several projects relating to cancer, and specifically breast cancer. Another sad event we've had is that one of my wife's best friends also had breast cancer; she was diagnosed last year at the age of 33 and sadly passed away this summer. She was picked up at a very late stage, multiple tumours and spread to the chest wall. Her diagnosis promted me to get more involved with cancer research. I'm a biochemist - cell biologist hybrid, so would like to put my skills to good use. From the heam side of things I'm currently working on new anticoagulant drugs and methods to assess blood clotting function in the lab under real-time and blood flow conditions. I have been looking at how white blood cells attach to blood vessels and exit the vascular system, and I'm now applying this to look at how cancer cells circulating in the blood stream break through the lining of our blood vessels and invade the underlying tissue. One of our collaborators found that a protein we work on, helps to prevent metastasis, I've got a student starting next march to look at this in more detail. And I'm also setting up a project to examine the effect of BRCA mutations.
Anyway, feeling better today and writing this has helped. Another few hours and I can go home! Just trying to take each day as it comes and enjoy every good moment.
Thanks again for your posts, please feel free to ask me anything anytime. Thanks for the support and I hope i can return it. I will remember you all in my thoughts and prayers.
xxxx
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Hi BreastCH,
You have come to the right place and hope that you find the support that you need.
I had FEC chemo and one of the main things to look out for, apart from the tiredness was keeping the mouth moist and the throat soothed by iced water whilst getting the infusion and maybe a fruit sweet to suck too.
I have been waiting this week for news from my daughter who like you has had 2 miscarriages..... at 11 weeks since June 2013 ,infact the 1st one was on her 40th birthday. She had problems at the beginning of this pregnancy and wasn't given reassurance at the 12 week scan but this week she was scanned and she is 18 weeks and the baby boy was kicking well.
I am concerned for her and as you have said wanted her to have a joyful pregnancy. She told me in May 2010 that she was pregnant with her son, Oskar and then in June I had to tell her that I had cancer. For me her pregnancy was a godsend it gave me something to focus on and look forward to but I know that she worried about me all the time.
There are people on this thread who will understand exactly how you and your wife feel as they have been in the same position.
Sending you thoughts and strength
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Hello Michael,
I was interested to know that you feel more at home in England and I love the way you express that feeling as having a warm blanket wrapped around you. Do you think you will come back to England? If so, will it be Essex?
I remember you said that your mother was Irish.
I was glad that you had posted to breastcancerhusband as I am sure you can identify with what he is going through. We have to be there for people.
Suewirral needs our support too. She has lost her partner, been through cancer and is now anxious about he daughter. I hope she will post soon to let us know how she is getting on.
Sending fond thoughts your way on what has to be one of the gloomiest days ever.
Sylvia
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Hello Marymargaret,
I was glad to know that you are so happy with your results. I do hope all will go well on December17th when you have your mastectomy. At least you will have that behind you for the Christmas holiday.
Everything is well with me. I am just looking forward to June 20th next year when I shall have reached ten years since diagnosis. I just hope nothing happens before that date, but the ten year mark is my goal at the moment. I am due to see the oncologist on May 1st 2015 and she has said I shall be discharged if all is fine. I know there are no guarantees and I know I shall feel strange when I am no longer part of the hospital scene. I shall keep on with the bitter apricot kernels, the green tea and the healthy diet, not to mention keeping active mentally and physically. Recently I found that mistletoe tea is back in one of my natural food stores, so I am drinking that as well. You will remember that I took oral iscador (made from mistletoe) starting from when I was diagnosed for five years.
Thinking of you and sending fond thoughts.
Sylvia xxxx
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Hello breastcancerhusband,
Thank you for your most interesting and informative post. It is all the mare appreciated given that your computer crashed before you could post the first time. When I am posting I do it in Word first and then copy and paste to bc.org. I have just had my mug of cocoa (Green and Blacks organic cocoa, a good sprinkling of cinnamon and Alpro unsweetened almond milk enriched with calcium!) so I should be alright.
I do hope Michael will tell you his story. If not it is all on this thread somewhere. It is quite interesting to go back to the beginning of this thread and read it all going through a few pages at a time. There is an enormous amount of information on it. We used to have another man on the thread posting for his wife with breast cancer (Peter and Liz). He actually read all of the thread from the beginning before posting. They had been through a lot and I think must have felt the need to take a break. I hope Peter might pop back in sometime in the future and let us know how things are going.
I was very interested to know what chemotherapy regimen your wife is on. The FEC is one that is used very often. I just had EC and I had four sessions of it every three weeks. I was very lucky in that I had no side effects except feeling tired and the hair loss of course. I was surprised to read that your wife is on paclitaxel (Taxol) and not docetaxel (Taxotere), but since they are both taxanes I am not sure how the oncologists decide which one to use. I did ask my oncologist why she had chosen docetaxel and she said it was not so harsh on the heart (not that I have or had any heart problems). It was when I went from the EC regimen to the docetaxel that I noticed my eyebrows and eyelashes disappeared. It was also then that I noticed some of my toenails were turning brown. Again, apart from this, and tiredness, I was fine.
During treatment I had quite a lot of talks with the chemotherapy nurses and they seemed to think the epirubicin (same group as doxorubicin) was the worst drug and it was called the red devil and turned your urine pink.
While on docetaxel I had a vague metallic taste in the mouth but it was nothing much and I was a bit sensitive to food smells. I think the secret of getting through chemotherapy is to do exactly as the nurses tell you and I remember being told to drink plenty of water after treatment to flush everything through.
I have noticed that some women on the threads do get nausea and vomiting but it is not something I experienced but I did drink plenty ginger tea with pieces of real ginger root put in it. Ginger capsules and ginger biscuits can help with nausea and feeling sick.
I was glad to know your wife was feeling better after a nights rest. Women do say that sometimes the steroids that are added to the chemotherapy treatment and the few you take for two to three days after each chemotherapy session, make them hyperactive. Some say the steroids make them put on weight, but I did not experience these things. I carried on normally and had a rest in the afternoon. My weight remained the same. I do remember that the oncologist asked for my weight and height before starting chemotherapy and explained that amount of drug given each time was based on these two things.
I also had an ECG before and after chemotherapy treatment. I had a CAT scan and bone nuclide scan before and after treatment.
I think it is true about the taxanes and how much they have helped TNBC patients. I know that in 2005 they seemed to be quite new in the UK and they are quite expensive.
It is probably a good idea to go into this chemotherapy with a positive and open mind and not to worry too much about all that is said about side effects. It is all very individual and we may not suffer the side effects that others do.
It is good that the company you work for is showing understanding of what you are going through, so that you can look after your wife.
I was interested to know that your wife is going to be tested for the faulty genes BRCA1 & 2 and Marymargaret has said there is a third one. I think younger women especially need to be tested because apparently they are more likely to have the faulty gene. Remember that her close family will probably need to be tested too. Males can also carry the gene. I have a friend whose sister died relatively young of breast cancer and my friend had a prophylactic bilateral mastectomy in the hopes of prevention. Her three brothers were also tested. My friend and two of her brothers tested positive but the youngest brother did not. I found it interesting that my friend and her two brothers had the same blood group but the younger brother did not. I do not know if there is any significance.
I am going to end this post but will continue later after a break.
Keep strong and positive.
Sylvia
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Dear girls thanks so much for your support. My daughter has an appointment at the breast clinic on 1st December, ( the same day as my follow up mammogram) almost a year ago to the day that I was diagnosed there please that she walks away from the clinic OK and that her lump is nothing. I went to Maggies on Wednesday and saw my breast care nurse for a chat today. She is so good and reassuring whilst also being honest.
Out tonight with a friend to see a band and I must admit will probably have a few drinks!!
Love to you all xx
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Hello breastcancerhusband,
I am now posting in answer to the rest of your post. What you said about medullary-like tumours was most interesting, especially that they are triple negative but do not behave like triple negative. Back in 2005 I was not given a pathology report after I had gone through neo-adjuvant chemotherapy and a mastectomy of the right breast. I was just told that I had an excellent pathology report and that there was no visible evidence of disease. The oncologist and breast cancer surgeon saw me together and told me they were very happy. I did then have three weeks of radiotherapy with boosters included.
I was interested to know that your wife's tumour was grade 3. I know that most tumours with triple negative receptors are grade 3 but not all of them are. I have read posts on the forum where some are grade 2. Do you know what stage was given? It goes from I to IV with some divided into a, b, c etc. I think you do not need too much information all at once. You do need to know the type of breast cancer, the stage, the grade and then the proposed treatment. I always prepared questions before appointments and I always had my husband with me for support and a second pair of ears.
I was interested in what you said about the white blood cells, but nothing like that was ever mentioned to me. I was told that I should not have breast cancer and that because tamoxifen was of no use the prognosis was poor. I decided to ignore all that, and here I am nearly ten years later! What I did learn from my oncologist was that tumours mutate and the TNBC status did not necessarily start off as such. I was also told by a clinical assistant to my breast cancer surgeon that the cancer could have started by a gene being closed down (p53) through a process known as methylation.
I was really interested in what you said about my own tumour and that it probably had immune involvement and that is why it got so large but did not spread beyond one lymph node, the sentinel node. I would be most interested if you could explain that more to me and what it means. Does it mean that the immune system failed and so the tumour grew big and then the immune system kicked in and then stopped it spreading? I have always wondered why some women with large tumours survive and some with small do not. All I can say is that my tumour seemed to appear from nowhere and seemed large almost straight-away. I know that a lot of women posting about TNBC say that it appeared from nowhere and was large very quickly.
I also remember my breast cancer consultant saying that sometimes healthy women get breast cancer because their immune systems get lazy because they do not have to fight illness. I have never been ill in my life before but it was discovered on diagnosis of breast cancer that I had an over active parathyroid gland, for which I had surgery and was cured in 2009. I feel strongly that testing for parathyroid problems should be part of routine blood check ups. I was told it was rare but I think it is more a case of its being under-diagnosed. There is research to connect parathyroid disease with breast cancer development.
I was most interested to know that you work in haematology. I have a haematologist living in the apartment complex where I live. It is fascinating that you have begun to set up projects relating specifically to breast cancer.
I was very sad to read that one of your wife's best friends had died of breast cancer. Did she have TNBC? Did she not have symptoms that would have prompted her to go to the doctors?
It is interesting to have a biochemist on the thread. Everybody on the thread will be keen to know more about a protein that helps to prevent metastases. Please keep us up to date. On the whole, the treatment of primary cancer seems to work and the disease is becoming a chronic disease but treatable. The challenge is metastatic breast cancer, although there are drugs that can keep you alive with this stage IV breast cancer for a long time.
You have certainly made a great contribution to this thread.
I was glad to know that you are feeling better and that writing out all your thoughts has helped. It is always very therapeutic to write down what is going on in your head and to get it all in order.
Take care of yourself and of your wife and three year old daughter and I hope you can have a nice weekend.
Fond thoughts.
Sylvia
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Hello linali (Lindsay) and Suewirral,
I just wanted to say that I was glad to hear from both of you and that I shall write in more detail tomorrow. I hope you have a good weekend and do something that makes you feel happy.
Fond thoughts.
Sylvia xxxx
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Hi Sue,
All our thoughts will be with you and your daughter on1 December .It is so hard when your children or someone close are facing difficult and scary situations. It hits you in the heart and can overwhelm you.
Love and thoughts
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Hi Sylvia,
I am up early and intend to go into town soon to shop and search for little figures to put on the Christmas cake.
Just the old fashioned kind. We have started a tradition that Oskar helps make the cake for his mummy and daddy and then comes back to decorate it. I have looked everywhere even on the internet and they are hard to find and if I have postage can be high. I want nothing fancy just something that Oskar can handle. I may look for small wooden decorations instead.
It may seem early to do this but I have hospital appointments and we are getting ready for our Christmas sale of work on the 29th.
We have spent the last couple of days sorting out Leigh. She was asked to leave a benefit night in a bar, partially because of Aspergers and how her body language prompted a barman to say she was drunk.....Leigh was ordering a coke and then also comments made of a transphobic nature. This will happen to Leigh again I'm sure and it is about finding the best way to keep Leigh safe.
Damian has been marvellous and whilst we know that there is a case under the Equal Status act he has spoken to the guy concerned and reached a solution . We want Leigh to be independent and she lives 2 to 21/2 hours away and so we need to put a lot of coping and emergency strategies in place.
This morning I just feel fortunate that I am able to be here to support Leigh. It has taken some time to come to this feeling and not to feel like I am on a rollercoaster and I know that the counselling has helped.
Later this morning I will go to Tai Chi . It is a wonderful class both for body and spirit.
I must thank you again for giving me a place to come to .
Have a good weekend
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Hello Sue,
Thank you for keeping in touch and letting us know about your daughter's appointment at the breast clinic on December 1st. We shall all be thinking of her. We shall be thinking of you as well on that day as you go for your first follow up mammogram. We all know that is also an anxious time.
I was glad to know that your chat with your breast cancer care nurse at the Maggies Centre did you some good. It is always beneficial to talk things out of your system and it helps to relieve the stress that you do not want building up inside you.
I hope you enjoyed your night out and that you will have a good weekend.
Thinking of you.
Sylvia xxxx
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Hello linali (Lindsay),
It is always good to hear from you and your posts are always interesting and informative.
I hope you and Oskar have a good time decorating the cake. I hope you find what you want in the way of cake decorations.
Let us know the dates of your appointments so that we can come here in support and think of you.
I hope all goes well for your Christmas sale on November 29th.
I do hope everything will turn out well with Leigh. She is very lucky to have all your support. It must be worrying for you trying to keep her safe when she is not living near you.
You must be kept very busy with your family, your work at the centre, taking care of yourself and Damian and doing Tai Chi. Your days must fly by.
Thank you for expressing your appreciation of the thread. It makes it all worthwhile and together we have made this a thread of which to very proud.
Do you still keep in touch with Bernie Ellen? If so, remember me to her and say that I hope she is well. You, Bernie, and Mumtobe, all from Ireland, have been great posters on this thread. Because we have been talking about babies, I have been wondering how she and baby Emma are getting on.
I do wish those who have moved on would pop in, if only to say that they have reached and anniversary date since diagnosis. It is so important to encourage the newly diagnosed and those going through treatment, and to let them know that they can get through this long journey.
Thinking of you.
Fond thoughts.
Sylvia xxxx
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Hello Normandee (Norma),
We have not heard from you in quite a while and I was wondering how things are going. I do hope you are keeping well and taking good care of yourself. In one of your last post you were talking about your husband's mother who had been diagnosed with breast cancer at the age of 90. How is she doing? I know you had a lot of stress going on and you were getting ready for the new term. It would be lovely to hear from you.
Fond thoughts.
Sylvia xxxx
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Hello Jacqueline1963,
I was wondering how things are going with you. The last time we were in touch you had not been at all well as you were going through chemotherapy. I hope that treatment is all behind you now and that you are leading a normal life after your cancer journey. If you are still viewing, please pop in and let us know that all is well.
Fond thoughts.
Sylvia xxxx
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Sylvia, you really are our beacon of hope. When Evie was in hospital, I learned that her nurse had BC so I got talking to her, she too was TN, 7cm and loads of lymph nodes had to be taken out and that was seven years ago. She had 8 tax, she was on some sort of trial and she truly believes that was what has got her through this for so long. I remember feeling so relieved when she told me she was TN and 7 years out AND a large tumour.
BreastCH, it's so interesting to hear about your work, it looks really positive! I too would like to know more about your research and what you are learning about this diagnosis. My Doctor said that my lump grew very quickly in a very short space of time and even though TN is not hormone related, the pregnancy did make it grow quicker. Being pregnant was probably what saved me though, I found the lump, otherwise I may not of found it until it was too late. After the scans I just couldn't believe that it hadn't spread considering the rate of growth and how big it was, I feel so very fortunate.
I have also being very lucky that I had a critical illness policy that paid out and so we could afford for my hubby to be off work until January. This was so needed especially at the beginning as baby had to be in special care for 8 weeks and it would of been very hard for me to cope. Will your baby be delivered early? I have found the the tax was the hardest to cope with, chemo was always friday and the steroids would make me hyper from friday to sunday and then I would be in bed from monday until wednesday, with about another three days of feeling just rough. I am just letting you know how I was on tax, everyone is different but it may help prepare you for what your family has got to come. On the whole it was very 'do-able' for me and I can't complain.
It also sounds like you've great faith too, my faith has never been stronger since my diagnosis and I too pray for everyone on this forum.
Sue, I will be thinking of you and your daughter on December 1st, this waiting for a diagnosis is so hard and hope that she leaves the clinic with good news.
Marymargaret
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Hello Marymargaret,
It was nice to hear from you. I was interested in what you had to say about Evie's nurse and the fact that she was TN and is now seven years since diagnosis. I was also interested to know that she had had a large tumour, as that was also my case and, of course, your case. It was even more interesting in light of what Breastcancerhusband said about large tumours and the immune system kicking in and stopping spread. It would have been interesting to know how many of the lymph nodes in the case of the nurse had been positive. Reading some of the threads, some surgeons seem to take out a lot of nodes that are negative, when just a few are positive. I had just one lymph node that was positive and my surgeon took out just six more to test. Of course, lymph nodes do not constitute metastases, but I am glad I did not have many taken out because it does affect the way your body works. With me, this large tumour seemed to come from nowhere, and stayed like that, even though I delayed my treatment for some months. In reality, none of us knows what will happen, as we are all individual.
On our small thread we have cases of three young women getting breast cancer while pregnant, so I wonder how common this is. We also have to remember that tumours mutate and as my oncologist told me my tumour did not necessarily start as non hormonal.
The proof that we are all different and individual is that I did not experience any real difference between how I felt during the first three months on epirubicin and cyclophosphomide, EC, and the second three months on docetaxel, Taxotere. I did not seem to be affected by the steroids either in my behaviour. It was not until I had nearly finished radiotherapy that I felt the soles of my feet did not feel right. I just lived with that until I saw a podiatrist who tested my feet and said I had neuropathy from chemotherapy. I then consulted the oncologist, told her this and she said it was definitely caused by the chemotherapy drug docetaxel (Taxotere). She told me there was no cure.
Like you, I would like to reassure everyone facing chemotherapy that it can be done and not to be afraid.
Keep up the good work, Marymargaret.
Fond thoughts.
Sylvia xxxx
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Hello Sylvia,
Just wanted to let you know that I am still here. I have been dealing with the ramifications of an injury that occurred during chemo and all that has transpired from that. It has made typing uncomfortable so haven't been doing much of that. I will give you all the gory details soon, still having some pain now.
Sue, my heart goes out to you and your daughter. Sometimes when it rains it pours, and the troubles seem to keep piling up, don't they? I offer you my prayers and best wishes, and hope for your daughter a good report from her next exam.
BC husband, welcome and sounds like you are a great source of info for everyone here, very interesting. I wish you and your wife the best possible results. MaryMargaretHope had a beautiful baby, and surely you will too.
I thought taxotere was the harshest drug for me, but maybe it was because I was worn down from the Adriamycin and Cytoxan.
Anyway, I will talk to you all soon.
Best wishes!
Mary (maryn8)
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Hello All<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />
Thanks for all the kind words and welcomes. I hope everyone
had a good weekend.My wife has coped very well with
this first cycle of chemo thus far, I think in part the anti-sickness and steroids
tablets have done their job. They certainly made her a bit hyperactive! She
stopped taking the tablets on Friday – although there is no major risk to baby,
I know she wants to minimise the amount of medication she has to take. This
left her quite tired on Saturday and Sunday, but nothing more than you would
expect with being 5 months pregnant. She complained of a dull fuzzy headache,
being very thirsty, but has been drinking lots and eating ice lollys and
exercise helped to clear her head. But no metallic taste as yet. In fact she
gave me a lie in on Sunday! We’re hoping that this week will be relatively
normal, baby is moving lots and our daughter is getting excited about Christmas
– so we’re keeping all our thoughts happy.It’s difficult not to reflect at
this time of year I guess, I’ve been thinking back over the past year and
although it has been tough in parts there have been some very happy times, it’s
hard to really believe we are in this situation – I’m sure you have all felt
the same.My wife’s friend had no symptoms.
She found a lump on her breast and went to the GP. They thought it was nothing,
and she in fact delayed the scan for about 3 weeks I think. No one ever really
talked about the presentation, all we know is that she has multiple tumours and
I believe they could see some chest wall involvement and lots of lymph nodes.
Then a few weeks later a scan showed liver tumours. Her BC was also TN, and I
think (although not 100% sure) she was tested for a new BRCA mutation. It was
an awful time. I remember clearly when we found out; my wife had been trying to
get hold of her to tell her she was pregnant and her friend was trying to get
hold of her to tell her the bad news, but they kept on missing each other’s
calls. When they finally did get to chat, we were in our local park by the
river on a sunny day in May 2013; my wife was so excited and straight away went
into her happy news. I then saw her face drop and tears in her eyes. I couldn’t
believe it when the call finished and she told me. That pregnancy ended in
miscarriage and we thought it would be the worst thing we would ever face, and
through it we were so thankful that, although this terrible thing had happened,
we were still both healthy and would get to have other children. Her boyfriend
was amazing and looked after her the whole way though. I remember seeing them
last Nov at a fireworks party and he looked drained. I couldn’t imagine what he
was feeling and never wanted to. I guess I can now, but my wife has good odds,
her friend didn’t and they were told the prognosis was very poor. The sooner
something is done to stop women both young and old suffering like this the
better.To answer some of the questions
asked:You are right Sylvia it is normally
Taxotere used by the NHS. The regular treatment is 3 X FEC, 3 X Taxotere. My
wife is having 4 x FEC, but her dose is slightly lower at 75mg compared to
100mg. But overall she will get the 300mg. With the Taxol our oncologist is
making an exception in her case. He feels that’s 12 weeks of Taxol will be
better, I think we are very lucky in how we are being treated. But both drugs
are very similar at any rate, but the dose dense regime should make it easier to
tolerate. But indeed, the introduction of Taxoids has changed things. I read
one study this weekend that showed for early stage triple negative, survival
rates with chemo including Taxoids was significantly higher than regimes
without Taxoids.Most triple negative tumours are
grade 3, every so often some crop up that are grade 2, and it’s almost unheard
of to see a grade 1. My wife stage is currently 1A/2A. The actual tumour size
was 1.5 cm x 2.3cm with no node involvement. Our oncologist has said that
although the largest dimension is 2.3cm (making it stage 2) because the smaller
dimension is 1.5cm (making it a clear stage 1) the overall tumour volume sits between
the two stages. At the moment there is no evidence of metastasis; however they
cannot do a PET/MRI scan because of the baby, and we’ve been told that even if
she wasn’t pregnant, without any outward sign of illness they wouldn’t do a
scan anyway.The immune involvement is very
interesting and certainly something that further research is needed on. You are
right, that one does indeed ask why some patients have big aggressive tumours
that do not spread and others have small, low grade tumours that are able to
spread very quickly. A study from a couple of years ago called the METABRIC
study analysed a huge number of breast cancers and grouped then into 10
clusters. This link gives a laymans overview but if anyone wants the paper
follow the links or ask me. (http://scienceblog.cancerresearchuk.org/2012/04/18/increasing-the-resolution-on-breast-cancer-the-metabric-study/).
The TN fall mainly into clusters 4 and 10. You’ll see from cluster 10, the 5
year outlook is given as poor, but the authors themselves actually agree that
this is based on older data (I’ll discuss this later) and that cluster 10
actually breaks down further into sub-clusters. Cluster 4 includes TN tumours
with immune involvement and these have excellent prognosis.In-keeping with this a study from
last year analysed TN tumours looking to highlight gene patterns that would
offer prognostic value; in this case they looked at Stage 1 and 2 node negative
patients and to see what patients would benefit from chemo. The group highlight
an 11 gene signature that could predict outcome or highlight the requirement
for chemo. Although the number of tumours analysed was quite small, the prediction
levels were rather good. 31 out of 33 patients that were predicted to have a
good prognosis were alive and disease free at the 120 month cut-off. Most of
the positive prognostic genes were related to immune response pathways. (http://jnci.oxfordjournals.org/content/106/2/djt376.longThis study from 2011 also shows
that there are different types of tumours and again shows that one class of TN
(IM) has altered expression of immune related genes. This class has a good
prognosis. They also show two other classes (termed M and MSL) that also
involve immune genes and have better prognosis. http://www.jci.org/articles/view/45014
I do need to have a better read of this study though to dissect it fully
though.Interestingly the same gene signature
highlighted in the above study that has immune involvement is also implicated
in the medullary and medullary-like tumours I mentioned before. It was
understood that the immune involvement in medullary BC was the reason for the
good prognosis. This study from 2010 shows that TN tumours with medullary like
features tend to have better prognosis: http://www.nature.com/modpathol/journal/v23/n10/full/modpathol2010123a.htmlAnd other studies have shown that
high levels of white blood cells in the tumour better the prognosis.To explain in laymans terms what
happens isn’t easy and I guess isn’t understood. But one way of looking at it
is like this: If you have a grade 1 cancer cell, it will actually appear to be
quite normal. The immune system is great at picking up foreign bodies, but is
designed not to attack itself, so a low grade cancer cell can slip under the
radar. Hence why a low grade breast cancer can be removed, kept at bay with
hormone supressing drugs, maybe a bit of chemo (although because low grade
cells grow quite slowly chemo isn’t really effective), but over time a single
low grade cancer cell can sneak in somewhere and turn into a secondary tumour.
Hence why the hormonal BC can reoccur at any time. But if you have grade 3
tumour cells, although aggressive and having the ability to spread fast, those
cells are now significantly non-self and open to be recognised as such by the
immune system, and if you are expressing the right immune related genes, or the
tumour is expressing something mutated that the immune system wants to have a
go at, your own defence mechanisms can kick in and keep the tumour in check. It
may not stop it growing, but it can certainly stop it spreading. Any cells that
do break away from the tumour could in theory be rapidly attacked by the immune
cells in the blood stream/lymphatic system. With a large 6cm tumour and only
one positive lymph node, I would argue that your immune system got involved and
although it couldn’t control the tumour growing, it certainly took care of the
cells that did escape. Or it kept the tumour in check, the tumour may have
grown large, but your immune system stopped any cells from escaping. Of course this
is pure conjecture and without a detailed analysis of your tumour impossible to
confirm! At any rate I’m extremely glad you are here 9 years later Sylvia! Well
done!Not sure about the parathyroid!
That is outside my scope of knowledge, but I will look up for you.Sylvia and marymargaret you both
mentioned your tumours appearing from no-where. My wifes was the same. It
certainly wasn’t there 3 months before she found the lump, it’s the fast
growing nature of TN tumours. I also think being pregnant helped my wife find
the lump. Although for the first trimester her breast were too painful to touch
as they were going through the normal first trimester changes. I do wonder if
being pregnant three times in relatively quick succession also contributed. She
was pregnant May 2013, miscarried July 2013. Pregnant Jan 2014, miscarried
March 2014. Pregnant June 2014, found the lump Oct 2014.BC in pregnancy is rare; I think
the NHS stat is 1 in 3000? Although that sounds too common! I think it’s on the
increase though because more women are choosing to have children later in life.
I know our oncologist has treated 8 women before my wife. (All the babies have
been fine, and all the woman are fine! The oldest child is 12 and his mother
was TN as well!)Marymargaret – yep, baby will be
delivered at 36 weeks. I was 7 weeks early and turned out ok! So we are not
worried. Thanks for info on how you coped with Taxol. She reacted quite well to
the steroids so hopefully they can pull her through.Anyway, I’ll stop rambling now. I
hope you all have a good week. I will remember you all in my thoughtsTom
xxx
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Hello Mary,
It was nice to hear from you. I do hope your problems with an injury that occurred during your chemotherapy will be dealt with and cleared up. I can understand your reluctance to type if it makes you uncomfortable and I know how wearing pain can be. Just post when you feel up to it to let us know how things are going.
I hope you managed to have a good summer and that you are bearing up during the autumn. I have watched all the news about the snow that is widespread in the US and was wondering whether you are in one of the states affected. All that snow reminded me of the seventeen years spent in Canada and all the shovelling and clearing of snow. The climate was so extreme and went from bitterly cold winters to extremely hot humid summers.
Are you busy preparing for Thanksgiving? I shall be thinking of you on that day. Here in England business has introduced Black Friday to get people out spending money that they do not have! However, they omitted to introduce Thanksgiving the day before. That is probably because they would have to give people a day off! Why is it called Black Friday?
Thinking of you and sending best wishes to you and your husband.
Sylvia xxxx
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Hello Tom,
It was good to know that so far your wife is coping well and that the anti-sickness and steroid tablets have done their job. It is good that she is keeping medication to a minimum. Remember though that the tiredness builds up as the treatment goes on and she will need to rest. It looks as though she is doing all the right things. Drinking and keeping hydrated is very important. I think the metallic taste comes mainly with the taxanes.
I forgot to mention in my previous post that many women on the forum opt to have an ice cap on their head during chemotherapy to prevent hair loss. I asked my oncologist about it in 2005 but she said she was against them out of fear of infection. Some women have also posted to say having their hands and feet iced during chemotherapy helped to prevent neuropathy.
I think it is good, when reflecting on the past year as we get to the end of the year, on the positive aspects of it rather than the negative ones. I know that back in 2005 it was hard for me to realise what was happening to me. I had my first dose of chemotherapy on November 17th and I could hardly believe it was me sitting in that ward of people hooked up to chemotherapy drugs. I was lucky to have my husband with me and a retired nurse whom I met at FORCE, the cancer charity built in the grounds of the RD&E Hospital in Exeter. She came to all my chemotherapy sessions. The next session I went wearing a wig because my hair had started to fall out during the three weeks between sessions. My next session was December 8th, so I was not thinking about Christmas that year.
I was most interested and sad to read what you had to say about your wife's friend. It only goes to show that you cannot go by what a GP says when it comes to lumps in the breast. You need to ask for a referral to the hospital and get a mammogram and ultrasound. We are constantly being told that cancer is a disease of old age and I think this should stop. It may be that the majority of cancers are in the over fifties but there are too many young people being diagnosed with cancer and especially too many young women with breast cancer. The younger women are more likely to have breast cancers with triple negative receptors and also to have the BRCA1 & 2 faulty genes. I can only speak from my own experience but I had absolutely no symptoms, no pain, just the sudden appearance of a large tumour.
I can imagine how awful all that experience was in 2013.
I have looked up the links that you have given and tried to come up with an overall idea of what everything means. The thing that stands out to me is that all the tumours are very individual in their contents. This is why I have said in the past on the thread that we cannot go by what happens to others with their tumours. We have to concentrate on our own case.
I was particularly interested about the ten clusters and that TN falls into cluster 4 and 10. With these being divided into sub clusters it just shows how individual everything is.
All I know from my own case is that I saw the GP, then I saw the consultant who was to be my breast cancer consultant and she did the fine needle aspiration and then referred me to her clinic for mammogram, ultrasound and core biopsy. When I saw her later the same day, she said my tumour was non-hormonal and the prognosis was poor because tamoxifen was no good. That stuck in my mind back in 2005. With all the information now available I do not think words like this should be said right at the beginning of treatment.
I am wondering how much of all the information available and the links you have posted are known by our breast cancer consultants, oncologists, radiologists etc. If I mentioned about clusters 4 and 10 to my oncologist would she be able to tell me now which cluster I fitted into?
I had excellent care and a breast cancer consultant and oncologist who always seemed ready to go that extra mile.
I think that when going through this breast cancer journey it is important to remain positive and strong and to do everything you can to keep as healthy as you can by eating properly and being as active as your treatment allows. I think that lifestyle is very important and that the western lifestyle is causing more and more people to have this awful disease. I know that I do everything I can to try to keep the cancer from coming back, but still I do not take anything for granted. Even if I achieve a ten year survival I shall still carry on doing what I am now doing and shall take nothing for granted.
I hope you have a good week and that your wife will continue not being too affected by the treatment.
To everyone, have a good week.
Best wishes.
Sylvia
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Hi Sylvia
Unfortunately the only way I will be able to return and live in Essex is by winning the lottery or there being a significant rise in house prices. Mind you someone was telling me last week that people from London are selling up and moving here. There are a lot of English in the town as well as Poles, Latvian, Bulgarian and Lithuanian, which makes the town quite cosmopolitan.
Michael
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