Calling all triple negative breast cancer patients in the UK
Comments
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Hello linali (Lindsay),
Thank you for your post. I enjoyed reading about the flowers in your garden. I find gardening very therapeutic. Last year I discovered a flower known as nemesia and I really love it. There are many different colours and they all have different fragrances. A lot of them have smells of fruit, but my particular favourite is the white coloured one called vanilla. It has such a lovely smell. I have planted a row of these different nemesias.
Thank you for the information about how lymphedema has affected you. This will be of interest to others who may be suffering in the same way. It sounds as though you have had a really bad time of it.
I was very interested to read about how you are making designs for Christmas cards to raise funds for your centre. You sound very artistic to me and if you feel like posting some of your work I am sure we would all be very interested. It was interesting to know that you like to do abstract work, because that is what I like.
I was glad to know that you enjoyed the photographs. Raymond puts them on the thread for me but he said that the bc.org forum is very slow and it was very tedious to post them. I think it is a good idea to have some photographs, illustrations or creative writing like poems from time to time, as it makes the thread more interesting and varied. I feel all of that is good complementary treatment and it shows that cancer has not taken hold of our lives. Apparently to post images you have to go to the icon at the top of the posting box which says Insert Image (seventh icon along) and then instructions come up. Give it a try.
Thank you for news about Bernie. I am so glad she is fine. Is anyone in touch with Mumtobe (Carol)?
Take care. Thinking of you.
Sylvia xxxx
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Hello Norma,
Thank you for your post. I was glad to know you enjoyed the photographs. There is certainly something about plants that does indeed lift the spirits. I really like hebes and as you say they seem to be thriving this year. The apartment complex in which I live is divided into three buildings and the grounds are big. I liaise with the gardener that we employ to cut the grass etc. over what to do in the flower beds and I have been looking after them for the twelve and a half years we have been here. Everything is looking really good this year.
Thank you for your kind words about the thread. I do try to make it meaningful and we are lucky to have such nice women (and man) on the thread. It is nice that you interact with one another and give that important support when and where it is needed. At the moment the two Marys need that support as they go through that long and tiring journey of chemotherapy. Surgery and radiotherapy are so short in comparison and then, of course, there are the accompanying problems to the treatment. Of course we have Carolben going through the very challenging journey of metastatic breast cancer. It is good that she is strong, optimistic and with a lovely sense of humour. She is an inspiration to us all.
I think we all appreciate the ordinariness of life after the traumatic journey that is the cancer one.
Have you been reading all the dire news of the state of the NHS? All this really concerns me as I think its creation was our finest moment.
Thinking of you.
Love
Sylvia xxxx
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Hello Marymargaret
I am sure you are busy savouring every moment with baby Evie and we are all so glad for you.
What is happening with your chemotherapy? When is the next one and will it be chemo 3?
Fond thoughts.
Sylvia xxxx
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Hello Gill,
Thank you for your post. It is always good to hear from you.
You did the right thing bringing your appointment forward as it is not right to put patients through weeks and weeks of anxious waiting. You must have been disappointed yesterday to be told the results were inconclusive. I do hope you will get a positive answer on Friday July 11th, that it will be good news, followed by a good weekend.
Try to keep busy from now until Friday and whatever the results you know you can get treated. Let us hope it is fat necrosis and that you can get on with your life.
I was interested to know about your flowerpot garden. It is amazing what one can do with some pots. Where I live we have two apartment blocks of nine apartments and a smaller block of what are really maisonettes with their own front door. In one of these one of the residents has done a lovely little garden on a space next to his parking area. It is very colourful and it even has a little vegetable bed on top of a container. I particularly like geraniums in pots and for an annual bedding plant I like begonias. They are an ideal plant for neat freaks like me!!!
Sending fond thoughts to you.
Sylvia xxxx
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Hello adagio
Thank you for your post and your kind words. It looks as though we are all great plant lovers on our close and united thread. I used to love gardening in Canada as well and really looked forward to spring and summer after the harsh winter in Ottawa. I always enjoyed the feverish activity of Victoria Day. We had most of the same plants we have here.
How are you getting on over there in Canada?
Here in the UK the whole emphasis has been on sport for a while. There has been the enthusiasm for the World Cup, even though England got knocked out early on. We have had Wimbledon and all the Brits were knocked out. Then this past weekend we have the start of the Tour de France which this year started in Leeds in Yorkshire. It then went from Cambridge through to Essex and onto London. People were turning out to watch in their millions. Attention will now turn to the Commonwealth Games in Scotland.
This country seems very enthusiastic about sports and animals, but indifferent to politics and we have a lot of problems in the UK. Do you get much news? We hear very little about Canada, except for the occasional appearance of the Governor of the Bank of England, Mark Carney, a Canadian.
Thinking of you and sending best wishes over the pond.
Fond thoughts.
Sylvia xxxx
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hi Sylvia
I thought you might like to see my little back yard
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Hello Gill
I was thrilled to see your photograph of your artistic horticultural corner!! I think it looks absolutely lovely and you obviously have green fingers and good taste. The colours are lovely. It is so nice to have photographs on the thread, as they cheer us all up.
Thinking of you and wishing you the very best.
Sylvia xxxx
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Hello ladies, I was diagnosed with TNBC on 4th June. Ironically I had been watching the Race for Life on the TV and decided to check myself. Found my right breast very hard although not sore and no skin change. Went to my doc the following week and he referred me to the Breast Clinic. The following evening (Friday) my breast felt sore, noticed ridges under my nipple and was slightly red. Went back to the doc on Mon and he gave me anti-robotics as he thought it was a cyst that had abcessed. After a week there was no change and I was sent to the hospital. Bloods showed no infection and a biopsy was done.
Was told the tumor was triple negative and I would get chemo first and then surgery. Also, my bone/Ct scans came back clear.After my oncologist examined me she wanted treatment to start next day! I could have passed out. So, had first chemo, was sick that evening and suffered a bad headache a few days later.
Feel I have been on a roller coaster. I had a Mammogram last September and it was clear. While in hospital one doc asked me if I had bumped my breast. Told him no then I remembered I fell while skiing in January. The only other point I remember is experiencing sharp pains in my breast a few months ago which lasted only about 5/10 seconds - but very painful. I put that down to being menopausal!
I am due chemo next week and prepared with my wig/bandanas. I have got over the shock and have accepted my illness and now have to be ready for the fight.
I pray to my God to give me strength to deal with this as best I can and not to go down any dark roads. Hardest part was telling our kids (24 and 21). I cried the whole day I was diagnosed and I was exhausted - so no more crying.
I do find reading this forum helps - especially the non-cancer, everyday stories. I am also trying to keep a normal routine. I make play tents and curtains and also just started quilting!
Will keep posting. Sylvia, your input is invaluable.
Jacqueline x
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Hello Jacqueline!
So sorry you have found yourself in this situation. TNBC is such a shock, it seems to me, because it seems to come out of nowhere in most cases. Like you, I had a clear mammogram in September and a gynecological exam in December. In January I had a good-sized lump and it's been a whirlwind ever since.
It does sound like they are moving quickly on your case, that is good. They did not give you a lot of time to dread starting chemo since you have already started. Mary Margaret and myself on this thread are going through chemo. The rest of the participants have mostly finished chemo and moved on, you will find much knowledge and wisdom from them. But you said you had been following the thread so you are familiar with the participants and you know how very helpful Sylvia is. And you are so right, it's nice to read of people leading normal lives and enjoying their usual pursuits.
I wish you the very best as you start your journey, talk to you soon.
Mary
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Hi everyone
I have just seen an interesting piece on RTE (ireland) concerning the anaesthetic type used during breast surgery may affect the risk of recurrence. Research at University College Dublin has found evidence that morphine based anaesthetic seemed to inhibit cancer cell death. They do say that the research is not conclusive and clinical trials are needed.
I have found this link: http://www.rte.ie/news/2014/0710/629720-anaesthes...
Michael
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Jacqueline - welcome to this supportive group of wonderful people - not a place any one of us wishes to be but such a wonderful resource to have. You are in the worst phase right now with just having had the news and starting treatment - it is a nightmare of emotions! But you will get through it - many of us on here have and some are still going through chemo, but you will get all the help and advice on here that you need. Just take each day as it comes - ask lots of questions and listen to your body. Rest when you need to and drinks lots of water to flush the drugs through your system. Let us know what chemo you are on and what your pathology report is - there is a section that you can simply fill in the details and then they appear at the bottom of your posts. I always find it interesting to see the different stats and different drug protocols each person has. It seems each oncologist has their own regime for treatments. Take care of yourself!
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Hello Jacqueline
I want to give you a very warm welcome to our thread and I am sure you will find all the support and comfort that you need from the wonderful people in this group of ours.
I am sorry that you have to be here and I know all the emotions that you must be going through as a result of this recent diagnosis. You will find that you will settle down a bit as you go through chemotherapy. It is a long and tiring journey, but you will get through it. You have the two Marys who are going through chemotherapy at present, so they will be able to offer you their ongoing experiences.
I can remember all the emotions that I went through in the first days and how anxious and afraid I was. This does pass as you accept what has happened and are kept busy with the treatment.
I was interested to know that you had hurt your breast while skiing and I have heard on this forum similar incidents and then a lump forming and I think there have been articles in the papers about this over the years. I hurt and strained my right arm while doing some difficult pruning of boughs in the garden at my brother's in 2004. It hurt for a bit and then I thought no more about it. On June 20th 2005 I was diagnosed with a large lump in my right breast. Who knows whether there is a connection?
I was glad to know that you had got very prompt attention and have already had one session of chemotherapy. Perhaps this is good in that you do not have the time to worry yourself sick about everything before starting treatment.
As adagio said, it would be useful if you could put your details in your profile so that we have them for reference.
I was interested to read that you had been told that you were triple negative and I was wondering whether you were told this rather than being told what kind of breast cancer you have. As you know, the triple negative refers to your receptor status and the fact that it is oestrogen, progesterone and HER2 negative, but did they tell you what kind of breast cancer you have. The most common is invasive ductal carcinoma (IDC) but there are less common cancers such as inflammatory breast cancer (IBC), and lobular breast cancer. There is also ductal carcinoma in situ (DCIS) and lobular carcinoma in situ (LCIS) which some describe as a precancerous state.
You should also have been told the stage and grade. The stages go from I to IV and are based on various factors such as size. Most tumours with TNBC receptor status are often grade III but can be grade II. Were you told the size of your tumour? I was wondering whether it was quite large given that you are having the chemotherapy before surgery.
It would also be useful to know the combination of chemotherapy drugs that you are having and what regime you are on. The most usual seems to be every three weeks.
It is useful to know which country you are in and how old you are.
During chemotherapy it is very important to drink plenty of water, get plenty of rest and to be strong and keep looking forward. Remember to take the medication they give you to take at home during the first few days. Hopefully these will keep sickness and nausea at bay. Remember also that you will be vulnerable to picking up infections etc. as your immune system will be low.
We do talk about anything we like on the thread, because switching off thoughts of cancer is good therapy.
Keep with us and we shall do all we can to help.
Fond thoughts.
Sylvia xxxx
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Hello Michael
It was nice to hear from you and thank you for your post and thank you for the link. I shall check it tomorrow.
I have read from time to time information about the type of anaesthetic used in surgery and recurrence. I seem to remember reading something about asking for tramadol rather than morphine, but it was some time ago. I shall get back to you when I have looked at your link.
You read or hear so much information that you end up not knowing what to believe. I have read many times that surgery can cause the cancer to spread. I had no choice about having chemotherapy first but in a way I was glad that I did as it is a systemic treatment so I tried to imagine that it was mopping up any cancer cells that were hiding around my body. I was also able to know during the six months of chemotherapy that the tumour was shrinking.
I hope you are having a good summer.
Fond thoughts.
Sylvia
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Hello adagio and maryna8
I hope all is well with both of you and that you, Mary, are not suffering too badly from your chemotherapy. I am so proud of the way the people on this thread come to the newly diagnosed to help them cope.
Fond thoughts.
Sylvia xxxx
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Hello Jackpot (Gill)
I am just popping in to say I shall be thinking of you tomorrow and hoping that all will go well for you. Please let us know what happens.
Fond thoughts.
Sylvia xxxx
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Hi Sylvia
Why did you have surgery before chemo? Janette had surgery and then chemo. She delayed surgery for three weeks so that we could have a holiday. I didn't think much about it at the time but I now wonder if that was detrimental.
Michael
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Hi Jacqueline,
Welcome, not the best place to be but definitely the most supportive. I would have been lost without it.
For me, too, the worst thing about my diagnosis was telling my husband and then having to tell my children, one with Aspergers and the other just newly pregnant. I was so concerned that the news would affect her pregnancy. There are books and advice on how to tell smaller children but none for grown ups. They of course were initially so upset and scared but then I took great comfort from following my daughters pregnancy and the fact that Leigh could say," I must put my issues on hold until you are well" and there were many!
I wish you well with your treatment, drinking water and keeping your mouth moist is important.
It is interesting that you say that you had a fall and felt pain. I found mine because of a sharp stabbing pain that wouldn't go. Also I am waiting to see a consultant to see if the fact that I had a bad case of infected shingles in the same place some years ago could have made my skin in that area hyper sensitive.
One piece of advise, if people want to help , let them.There was just my husband and myself, all our relatives live some distance away or abroad. I think that I was too independent and towards the end of my chemo, I do wish that I had taken up some of the kind offers e.g. shopping or the odd cooked meal.
Thinking of you and your family.
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Hello Michael,
I had chemotherapy before surgery because I was not given any choice. I had a large tumour, 6cms+, so I was not given any choice. I believe it is quite common to have chemotherapy before surgery if you have a large. It is to shrink the tumour and to make surgery easier. I had the six months of chemotherapy and then had a three week rest before having a mastectomy to the right breast. Some weeks later I had three weeks of radiotherapy.
How are you keeping? Are you having any treatment?
Best wishes,
Sylvia.
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Hello Michael
I have just had a look at the link that you posted and as I suspected the 'guilty' anaesthetic that may cause recurrence is morphine and I suspect that this is the most common anaesthetic used. This is why I feel so strongly that in all things medical the patient has to take control and be assertive. We have every right to ask what anaesthetic will be used on us when we are having surgery, I have no idea what anaesthetic I had back in 2005 and likewise I have no idea what anaesthetic I had in 2009 when I had surgery to remove one of my overactive parathyroid glands. I asked so many questions during both treatments but at that time it did not occur to me to question what kind of anaesthetic I was having.
It was only afterwards that I remember reading that patients should have tramadol in preference to morphine.
I must admit I have never heard of propofol, the drug mentioned on the link.
I started browsing other topics there and was interested to read that a Cambridge Professor says that there will be no deaths from cancer in thirty to forty years time and that the disease will be managed and be a chronic disease. It will not be cured but managed. What I am wondering is will the treatment kill patients, so it can be said they did not die of cancer!
It would be interesting to know if anyone has had propofol as an anaesthetic.
Best wishes.
Sylvia
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Hello everyone
I am just popping in to wish you all a good weekend and to say I hope you are slowing down a bit on Friday in readiness for some relaxation.
I was wondering how many of you are reading any books connected with cancer. As you know, my latest one that I am reading is Beat Cancer, the ten step plan to help you overcome and prevent cancer.
I was wondering if you are all great readers in general and what you tend to read. I read all sorts of different books, but am struggling to read fiction these days. I do have a novel that I am slowly reading entitled Virginia Woolf in Manhattan by Maggie Gee. Have any of you read it?
I was looking up a new drug for HER2+ breast cancer that is advanced and came across T-DM1, brand name Kadcyla. While reading about it I was concerned to read that it is about the eighth cancer drug refused by NICE on grounds of cost. I think it casts about £6,000 a treatment. I was interested in it because of someone I know who is HER2+ advanced.
Thinking of you, Gill, Carolben and our three women going through chemotherapy.
Best wishes to all of you.
Sylvia xxxx
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Hi Sylvia
I can see why they would do chemo first in order to shrink a large tumour. I am not sure how large Janette's tumour was, it felt like an egg. She originally had a lumpectomy.
I am waiting for my hospital appointment to come through.
It is a big holiday weekend in NI this weekend. Most of the population seems to have gone away.
I hope everyone has a good weekend.
Michael
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hi Sylvia
Got results today and it was a big hard lump of fat necrosis 25mm x 25mm and they said it mimicked a tumour perfectly....I can't tell you how relieved I am
The surgeon was surprised at the results I think they were convinced it was back, I've got to go back on the 23rd July to discuss options, even though it was the trauma of surgery that caused it, surgery to remove it is an option mainly because it could hide another lump that might not be as friendly so I'll wait till I speak to my own surgeon then and see what she recommends
Well I might open a nice bottle of wine later to celebrate, I had my first year anniversary from diagnosis a couple of days ago but never celebrated because I had this hanging over me, feel like a weights been lifted.
Hi Jacqueline
Sorry you've found yourself on here but you will find no end of advice and support from everyone here, we've all been through or are going through the same and living proof you do come out the other side...echo everyone else's advice especially about drinking plenty of water
Take care
Gill
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Hi Gill,
You must be so relieved, enjoy the weekend.
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Hi all you ladies who replied to my post.
I have now realised I did not have all my info made public! Thanks for all your advice and kind thoughts. To summarise, my tumor is 2.5 cms, my surgeon advised me it was triple negative and inflammatory breast cancer was mentioned. It has spread to the nodes but as mentioned earlier, both scans came back clear. Surgeon also said there was a lot of fluid around the tumour. My breast feels heavy and it looks a cup size bigger. They want to do a Mammogram but oncologist said breast was too hard and it would be too painful.
I think that after my next chemo I will go straight home and drink plenty of water to see if this will have any effect on the sickness, instead of going to M & S!!
I have had my hair cut short and it is beginning to fall out. Don't know what to expect _ will I wake up one morning and it is all on the pillow or maybe just get gradually thinner?
Sylvia/Mary - I will ask more about my diagnoses next week and update my info, as I was all over the place.
Gill - so pleased with your good news! Will take more water as advised.
Lindsay - I have an older friend who has already commanded the ironing basket, but lots are now being tumble dried and folded.
Thanks again ladies for the advice and support.
Jacqueline
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Hi adagio,
yes, my emotions were all over the place but once I accepted my condition I began to sleep better. I refuse to be down about this and as my sister said "you be in charge of this". I began to drink green tea and introduced flax seed to my diet (I have quite a healthy diet anyway) but oncologist told me to stop and eat as normal. The time for that was after treatment. Have stopped beating myself up wandering what I didn't do, surgeon told me - you are a female. You did nothing wrong. Non-drinker, non-smoker and breast fed two children.
Thanks again for the support.
Jacqueline
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Hi everyone,
I hope you like the smell of sandelwood:
http://time.com/2969963/sandalwood-scent-heal-wou...
Michael
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Hello everyone
I have just caught up with all your posts and will post more later on. I just wanted to say how glad I am for you, Gill, with the good news. We all know the great relief and feeling of euphoria when we get good news. I hope things will work out with the fat necrosis and that you will make the best decision for you.
To Jacqueline, we are all here supporting you and will help you through your chemo. Drinking plenty of water, especially in the first days after treatment, is very, very important. If you cannot face water all the time, I am sure ginger tea will help to keep you hydrated and keep nausea away. I shall post in more detail later.
To Michael, I hope you have a good Bank Holiday weekend. I saw from my diary that today is Orangemen's Day in Northern Ireland and that Monday July 14th is a Bank Holiday. Are you doing anything special?
I shall look at your link later.
To adagio, thank you for your strong contribution to our thread and the unfailing support you give.
Fond thoughts to you all and have a good weekend.
Sylvia xxxx
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Jackpot, congratulations on your good news! Now there are more decisions for you, but I'm sure your surgeon will have a good idea on how to proceed. What a relief, enjoy the wine!
Best wishes, Mary
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Jacqueline, sorry to hear of your nausea; did they give you pills to take at home for the nausea? When I had the sick-making chemo they gave me IV anti-nausea meds during infusion and pills to take at home for a few days afterwards. They did work, but the unpleasant side-effect is constipation. I suppose it is better than nausea! The chemo I am doing now is not nausea-inducing but it has other side effects.
I'm not sure how the hair comes out on it's own.....when I could pull mine out by the handfuls I went and had it clipped down to the scalp. Instead of having all that hair flying around.
Drinking lots of water and accepting help is great advice, also I would add that eating is very important whether you feel like it or not. Protein is important, my body seems to crave protein. Someone told me that the chemo breaks down the muscle tissue in the body and the protein is necessary to keep rebuilding. Whether that's scientifically true I'm not sure, but I know I feel thin and weak so some more muscle would be good!
It sounds like your breast is very painful, I do hope the chemo helps with that soon.
Talk to you soon, Mary
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Hi, Sylvia!
I enjoyed the pictures of your flower beds, they are so beautiful! I have not figured out how to post pictures on this site, can you tell me how?
I am on Day 11 of my third Taxotere treatment, the watery eyes are back and the sinus and mouth pains. So far I have escaped the mouth blisters, I have been faithfully swishing with the salt/soda rinse. My main concern is the neuropathy in my feet, one of the nurses told me it will not go away but will get better after treatment. I know you have issues with it, and what concerns me is that it could get worse instead of better. I think I need some encouragement to go on with my 4th Taxotere treatment. and need to hear that I will be better off with another treatment than without it. My MO does not seem overly concerned about it, of course his main concern is the cancer recurrence.
I hope you are having a good weekend, Sylvia
Mary
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